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Disability/Diagnosis-Specific Advocacy

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Description: Voluntary health organizations committed to empowering and enhancing the lives of individuals with disability/diagnosis-specific conditions and their families through support and public awareness. Programs that offer workshops, discussion groups, activities and other types of training that sensitize participants to people with disabilities, help them experience what it is like to have a disability, and share techniques for positive communication and interaction with people who have disabilities. (AIRS)

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Disclaimer...
Note: Service listings do not represent a recommendation or endorsement by the Medical Home Portal staff or its sponsoring organizations; nor do they reflect any assessment of the quality or value of a listed Service.

UT (67)


Statewide (16)


American Fork (1)


Cedar City (1)


Clearfield (1)


Layton (1)


Lehi (1)


Logan (2)


Ogden (2)


Pleasant Grove (1)


Price (2)


Provo (2)


Salt Lake City (28)


Sandy (1)


Springville (1)


St. George (3)


Taylorsville (2)


West Valley City (1)


Woods Cross (1)


Nationwide (25)


UT

Statewide

American Diabetes Association - Utah
986 West Atherton Drive Ste 220
Taylorsville, UT 84123
Phone: 801-363-3024
Service Categories:
Disability/Diagnosis-Specific Advocacy
Therapeutic Camps
Address: 986 West Atherton Drive Ste 220
Taylorsville, UT 84123
Phone: 801-363-3024
Toll Free Phone: 888-342-2383
Fax: 801-261-3005
Service Categories:
Disability/Diagnosis-Specific Advocacy
Therapeutic Camps
URL: http://www.diabetes.org/living-with-diabetes/parents-and-kids/diabetes-care-at-school/legal-protections/school-laws-and-policies/utah.html
Eligibility: Diabetes. Minimum age 16 alone, 12 to 16 with adult chaperone; no theft, violent or sexual offenses. Must speak some English.
Wheelchair Accessible: Complete
Services Provided: Educating the public about how to stop diabetes and support those living with the disease.
Provider Profiles: Camp ICANDO, Olympus High School, Salt Lake City, 1 week in summer
Contact Beverly Bartel for more information at bbartel@diabetes.org or 801-363-3024 ext. 7072
Original Source:
Last Updated: 6/26/2018
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American Heart Association of Utah
465 South 400 East Ste 110
Salt Lake City, UT 84111
Phone: 801-702-4420
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Address: 465 South 400 East Ste 110
Salt Lake City, UT 84111
Phone: 801-702-4420
Toll Free Phone: 800-242-8721
Fax: 801-532-2101
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
URL: http://www.heart.org/HEARTORG/Affiliate/Salt+Lake+City/Utah/Home_UCM_WSA009_AffiliatePage.jsp
Eligibility: Open to everyone.
Wheelchair Accessible: Complete
Services Provided: Advances groundbreaking medical research, spreads lifesaving knowledge, and reaches out to people of all ages about cardiovascular disease and stroke.
Original Source:
Last Updated: 4/25/2018
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Autism Council of Utah (ACU)
780 Guardsman Way
Utah Parent Center, Pingree School
Salt Lake City, UT 84108
Phone: 801-272-1051
Service Categories:
Community Advocacy Agencies
Disability/Diagnosis-Specific Advocacy
Address: 780 Guardsman Way
Utah Parent Center, Pingree School
Salt Lake City, UT 84108
Phone: 801-272-1051
Service Categories:
Community Advocacy Agencies
Disability/Diagnosis-Specific Advocacy
URL: http://www.autismcouncilofutah.org/
Eligibility: Open to all.
Services Provided: Provides advocacy, maintains and improves services and resources for people with autism throughout Utah. Website provides referrals to various related resources statewide.
Provider Profiles: Internet resources, use search to find local resources.

Supporting International Meeting for Autism Research (IMFAR) May 2015
Original Source:
Last Updated: 4/30/2018
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Autism System Development Program, CSHCN Bureau, Utah Department of Health
44 N. Mario Capecchi Drive
PO 144610
UT 84114-4610
Phone: 801-584-8455
Service Categories:
CSHCN Administration & Programs
Departments of Health, State
Disability/Diagnosis-Specific Advocacy
Organization Name: CSHCN Bureau, Utah Department of Health
Address: 44 N. Mario Capecchi Drive
PO 144610
UT 84114-4610
Phone: 801-584-8455
Service Categories:
CSHCN Administration & Programs
Departments of Health, State
Disability/Diagnosis-Specific Advocacy
Email: ckingsbury@utah.gov
URL: http://www.health.utah.gov/cshcn/programs/autism.html
Eligibility: Autism, reside in Utah
Services Provided: Through the Autism Systems Development Program, the CSHCN Bureau provides leadership that brings together many of the agencies and advocates who influence the statewide system of services for children with autism spectrum disorder (ASD) and their families.

The program has four components: Utah Autism Initiative (UAI), Utah Registry of Autism and Developmental Disabilities (URADD), Data System Integration, and ASD Resource Management. The ASDP:
- Refers individuals with ASD to services for evaluation and treatment
- Refers to care coordination programs
- Updates ASD diagnostic providers list
- Updates ASD treatment resources list
- Expands previously conducted ASD services survey to assess service needs and identify
barriers for care across Utah
- Compiles annual report summarizing ASD needs in Utah
Provider Profiles: Colin Kingsbury, Program Manager
M - F 8 - 5
Statewide
Original Source:
Last Updated: 10/11/2017
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Brain Injury Alliance of Utah
5280 South Commerce Drive Ste E-190
Murray, UT 84107
Phone: 801-716-4993
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
Services for People with Disabilities
Address: 5280 South Commerce Drive Ste E-190
Murray, UT 84107
Phone: 801-716-4993
Toll Free Phone: 800-281-8442
Fax: 801-716-4995
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
Services for People with Disabilities
URL: http://www.biau.org
Eligibility: Open to those who have had a brain injury. Bring a yoga mat.
Wheelchair Accessible: Complete
Services Provided: Provides education and support through facilitation of resources for the issues of prevention and recovery of brain injury (TBI) in the state of Utah. Annual Family & Professionals Conference. Teen/young adult Post Concussion Syndrome (PCS) Support Group, webinars for people with traumatic brain injury, family caregivers and professionals in the field.
Original Source:
Last Updated: 4/25/2018
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Disability Law Center
205 North 400 West
Community Legal Center
UT 84103
Phone: 801-363-1347
Service Categories:
Disability/Diagnosis-Specific Advocacy
Information & Referral / Hotlines
Legal Services, General
Address: 205 North 400 West
Community Legal Center
UT 84103
Phone: 801-363-1347
TDD: 800-550-4182
Toll Free Phone: 800-662-9080
Fax: 801-363-1437
Service Categories:
Disability/Diagnosis-Specific Advocacy
Information & Referral / Hotlines
Legal Services, General
URL: http://www.disabilitylawcenter.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=424983:4511315:426983:4513315&mxv=425983&myv=4512315&mlbl=455%20East%20400%20South%20Nbr%20410&tools=yes&mlbl2=Disability%20Law%20Center
Eligibility: Must have a disability
Wheelchair Accessible: Complete
Services Provided: The Disability Law Center (DLC) is a private and nonprofit organization working to enforce and strengthen laws that protect the opportunities, choices and legal rights of Utahns with disabilities. The focus is disability discrimination, areas related to disability where it provides information. Does not provide assistance with filing for disability benefits, personal injury, family law, guardianship, or evictions.
Original Source:
Last Updated: 2/28/2018
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Leukemia and Lymphoma Society - Utah
310 East 4500 South, Ste 240
Murray, UT 84107
Phone: 801-281-6618
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Address: 310 East 4500 South, Ste 240
Murray, UT 84107
Phone: 801-281-6618
Toll Free Phone: 877-243-8908
Fax: 801-281-6659
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
URL: http://www.lls.org/utah
Map URL: http://mapit.utah.gov/viewmap?args&mbox=423148:4511863:425148:4513863&mxv=424148&myv=4512863&mlbl=180%20South%20300%20West%20Suite%20260&tools=yes&mlbl2=Leukemia%20And%20Lymphoma%20Society
Eligibility: No restrictions
Wheelchair Accessible: Complete
Services Provided: Funds lifesaving blood cancer research around the world and provides free information and support services.
Original Source:
Last Updated: 3/7/2018
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Lupus Foundation of America - Utah Chapter
352 South Denver Street Ste 101
Salt Lake City, UT 84111
Phone: 801-364-0366
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Prescription Drug Patient Assistance Programs
Address: 352 South Denver Street Ste 101
Salt Lake City, UT 84111
Phone: 801-364-0366
Toll Free Phone: 800-657-6398
Fax: 801-364-0368
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Prescription Drug Patient Assistance Programs
Email: info@utahlupus.org
URL: http://www.utahlupus.org
Eligibility: Open to the public.
Wheelchair Accessible: Complete
Services Provided: The Lupus Foundation of America is leading efforts to find the cure for lupus and help people who are affected by the disease.
Original Source:
Last Updated: 2/5/2018
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National Federation of the Blind of Utah
266 Elizabeth Street
Salt Lake City, UT 84102
Phone: 801-463-6632
Service Categories:
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Information & Referral / Hotlines
Local Support Groups, Disability/Diag
Scholarships
Address: 266 Elizabeth Street
Salt Lake City, UT 84102
Phone: 801-463-6632
Toll Free Phone: 888-292-3007
Fax: 801-294-6000
Service Categories:
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Information & Referral / Hotlines
Local Support Groups, Disability/Diag
Scholarships
Email: nfbofutah@gmail.com
URL: http://www.nfbutah.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=424500:4522828:426500:4524828&mxv=425500&myv=4523828&mlbl=132%20Penman%20Lane&tools=yes&mlbl2=National%20Federation%20Of%20The%20Blind
Eligibility: Blind, parents of blind children, and newly blind persons.
Wheelchair Accessible: Complete
Services Provided: Provides educational information, literature, community outreach, advocacy and referral services to the blind, parents of blind children, and newly blind persons.
Since 1957, the Federation’s purpose is to help blind people achieve self-confidence, self-respect, and self-determination. Monthly gatherings. Transition age program, Project STRIVE.
Provider Profiles: NFB of Utah has 5 chapters located in St. George, Utah County, Salt Lake, Weber/Davis, and Logan; as well as 3 divisions that work specifically with students, seniors, and parents of blind children.
President Everette Bacon
Original Source:
Last Updated: 3/29/2018
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National Kidney Foundation of Utah and Idaho
3707 North Canyon Road, Ste. 1D
Provo, UT 84604
Phone: 801-226-5111
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
Address: 3707 North Canyon Road, Ste. 1D
Provo, UT 84604
Phone: 801-226-5111
Toll Free Phone: 800-869-5277
Fax: 801-226-8278
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
URL: http://www.kidneyut.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=443685:4458134:445685:4460134&mxv=444685&myv=4459134&mlbl=3707%20North%20Canyon%20Road%20Suite%201%20D&tools=yes&mlbl2=National%20Kidney%20Foundation
Eligibility: Patient programs restricted to kidney patients and their families, otherwise, no restrictions.
Wheelchair Accessible: Complete
Services Provided: Works to prevent kidney and urinary tract diseases, improve the health and wellbeing of individuals and families affected by these diseases, and increase the availability of all organs for transplantation.
Original Source:
Last Updated: 11/27/2017
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Tourette Syndrome Association - Utah Chapter
1709 Princeton Ave
Salt Lake City, UT 84108
Phone: 801-722-5363
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Tourette Syndrome Programs
Address: 1709 Princeton Ave
Salt Lake City, UT 84108
Phone: 801-722-5363
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Tourette Syndrome Programs
URL: http://www.tourette.org/
Eligibility: Children with Tourette Syndrome and their families
Services Provided: A nonprofit, volunteer-led organization that provides support and resources to individuals and families affected by Tourette Syndrome. Tourette syndrome is neurodevelopmental disorder evident in early childhood or adolescence characterized by motor and vocal tics.
Co-occurring conditions are Attention Deficit Hyperactivity Disorder (ADHD) and Obsessive Compulsive Disorder (OCD).
Original Source:
Last Updated: 1/25/2018
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Utah Asthma Program (UAP), Bureau of Health Promotion, Utah Department of Health
288 North 1460 West
PO Box 142107
UT 84114-2107
Phone: 801-538-6894
Service Categories:
Departments of Health, State
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Organization Name: Bureau of Health Promotion, Utah Department of Health
Address: 288 North 1460 West
PO Box 142107
UT 84114-2107
Phone: 801-538-6894
Fax: 801-538-9495
Service Categories:
Departments of Health, State
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
URL: http://www.health.utah.gov/asthma
Languages Spoken: Spanish
Eligibility: No charge, no health insurance required
Wheelchair Accessible: Complete
Services Provided: Provides comprehensive asthma care by ensuring availability of and access to guidelines-based medical management and pharmacotherapy for all Utahns with asthma, and to link those with poorly controlled asthma to individualized services.
Utah Asthma Home Visiting Program for individuals with asthma living in Salt Lake and Utah Counties.
Prescription Assistance Program for Patients with Asthma http://health.utah.gov/asthma/basics/rxassist.html
Provider Profiles: Brittany Guerra, MPH, Health Program Specialist III
Kellie Baxter, Health Program Specialist
Original Source:
Last Updated: 2/14/2018
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Utah Department of Health Arthritis Program, Utah Department of Health
288 North 1460 West
Salt Lake City, UT 84116
Phone: 801-538-9340
Service Categories:
Disability/Diagnosis-Specific Advocacy
Organization Name: Utah Department of Health
Address: 288 North 1460 West
Salt Lake City, UT 84116
Phone: 801-538-9340
Service Categories:
Disability/Diagnosis-Specific Advocacy
URL: http://www.health.utah.gov/arthritis
Eligibility: Ages 18 and older
Wheelchair Accessible: Complete
Services Provided: Increases participation in programs proven to help people with arthritis and other chronic conditions. Programs include Arthritis Foundation Exercise Program, EnhanceFitness, Walk With Ease, Living Well with Chronic Conditions, and Living Well with Diabetes.
Original Source:
Last Updated: 3/15/2018
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Utah Family Voices (UFV)
230 West 200 South Ste 1101
PO Box 144610
Salt Lake City, UT 84101
Phone: 801-272-1062
Service Categories:
Disability/Diagnosis-Specific Advocacy
Family Advocacy
Local Support Groups, Disability/Diag
Parent/Family Education
Address: 230 West 200 South Ste 1101
PO Box 144610
Salt Lake City, UT 84101
Phone: 801-272-1062
Toll Free Phone: 800-468-1160
Fax: 801-272-8907
Service Categories:
Disability/Diagnosis-Specific Advocacy
Family Advocacy
Local Support Groups, Disability/Diag
Parent/Family Education
Email: info@utahfamilyvoices.org
URL: http://www.utahfamilyvoices.org
Languages Spoken: Spanish services available
Eligibility: For Utah families with a child or youth with a physical, mental or developmental special need. Anyone can access the materials on the website.
Services Provided: Staffed by parents of children with special health care needs, UFV offers statewide assistance in a variety of ways: providing emotional and peer support through direct contact by phone, email and/or in person to families, assisting with navigation of credible information and referrals so families can access the appropriate public and private resources and services, presenting customized training and workshops for families and professionals on a variety of topics; and providing information and training to professional partners and health care providers on family-centered care and family involvement.
Provider Profiles: 1-844-838-8275
The Family to Family network (FtoFN) is a statewide parent support network run by volunteers.
Funded in part by the Maternal and Child Health Bureau.
Original Source:
Last Updated: 6/21/2018
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Utah Regional Leadership Education in Neurodevelopmental Disabilities (URLEND)
UT
Service Categories:
Continuing Medical Education
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Address: UT
Service Categories:
Continuing Medical Education
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
URL: http://www.URLEND.org
Eligibility: Graduate level training, five states include Utah, Idaho, Montana, Wyoming and North Dakota.
Services Provided: URLEND is part of a Maternal Child Health Bureau Grant, one of 43 unique LEND programs in 37 states. Utah Regional LEND is a long-term graduate training program covering five states: Utah, Idaho, Montana, Wyoming and North Dakota. This program uses state-of-the-art technology to connect groups of trainees. As future leaders, URLEND participants are trained to move beyond discipline boundaries to provide optimal treatment to children and adolescents with special health care needs. Because families are essential to wellbeing, this program emphasizes the role of family-centered care.
Provider Profiles: Five states include Utah, Idaho, Montana, Wyoming and North Dakota.
Original Source:
Last Updated: 6/14/2018
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Utah Statewide Independent Living Council (SILC), Utah State Office of Rehabilitation (USOR)
UT
Service Categories:
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Home Repair / Modification Programs
Independent Living
Local Support Groups, Disability/Diag
Services for People with Disabilities
Organization Name: Utah State Office of Rehabilitation (USOR)
Address: UT
Service Categories:
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Home Repair / Modification Programs
Independent Living
Local Support Groups, Disability/Diag
Services for People with Disabilities
URL: http://usilc.org/il-centers
Eligibility: Utah, disability
Services Provided: Utah SILC is a nonprofit planning and advocacy council, working with USOR and ILCs to develop the state plan for Independent Living Centers (ILCs). ILCs are non-residential, community-based, and cross-disability.
Funding for assistive technology may be available to help with assistive technology, ramps, modifications, etc. for eligible individuals. Money is appropriated every July. Due to the volume of requests, families and individuals may be put on a waiting list until additional funding is allocated.
Provider Profiles: ILCs in Utah: Ability 1st (First) (1), Active Re-Entry (5), Options for Independence (2), Red Rock Center for Independence (1), Roads to Independence (1), Utah Independent Living Center (1)
Original Source:
Last Updated: 2/14/2018
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American Fork, UT

Mutual Respect Advocacy and Understanding (MRAU)
895 North 900 East
American Fork, UT 84003
Phone: 801-763-4008
Service Categories:
Community Service Opportunities
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Guardianship
Address: 895 North 900 East
American Fork, UT 84003
Phone: 801-763-4008
Fax: 801-763-4214
Service Categories:
Community Service Opportunities
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Guardianship
URL: http://www.mrau.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=433432:4470726:435432:4472726&mxv=434432&myv=4471726&mlbl=895%20North%20900%20East&tools=yes&mlbl2=Mental%20Retardation%20Association%20Of%20Utah
Eligibility: Anyone interested in the welfare of individuals and families of all ages who deal with mental disabilities and/or developmental disabilities
Services Provided: 1. Establish and coordinate volunteer activities
2. Furnish information, referral, education, newsletters, conferences
3. Promote people-first concepts
4. Help families with guardianship information forms
Original Source:
Last Updated: 3/17/2015
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Cedar City, UT

Family to Family Network - Iron County, Utah Parent Center
751 South 300 East
Cedar City, UT 84720
Phone: 435-463-7404
Service Categories:
Disability/Diagnosis-Specific Advocacy
Family Support Centers/Outreach
Local Support Groups, Disability/Diag
Organization Name: Utah Parent Center
Address: 751 South 300 East
Cedar City, UT 84720
Phone: 435-463-7404
Toll Free Phone: 800-468-1160
Fax: 801-272-8907
Service Categories:
Disability/Diagnosis-Specific Advocacy
Family Support Centers/Outreach
Local Support Groups, Disability/Diag
Email: ftofn@utahparentcenter.org
URL: http://www.utahfamilytofamilynetwork.org
Eligibility: Must have a documented disability.
Services Provided: A grassroots volunteer group composed of family members across Utah who have a relative with a disability. Local networks across Utah offer support, education, and resources to families of persons with disabilities. Funded by the State Division of Services for People with Disabilities (DSPD). Specializes in helping people on the waiting list for services.
Original Source:
Last Updated: 4/6/2017
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Clearfield, UT

Davis County Communicable Disease and Epidemiology Division
22 South State Street
Clearfield, UT 84015
Phone: 801-525-5200
Service Categories:
Departments of Health, Local
Disability/Diagnosis-Specific Advocacy
Address: 22 South State Street
Clearfield, UT 84015
Phone: 801-525-5200
Fax: 801-451-3242
Service Categories:
Departments of Health, Local
Disability/Diagnosis-Specific Advocacy
URL: http://www.daviscountyutah.gov/health/
Services Provided: Provides services regarding Communicable Disease and Epidemiology (STD/HIV Testing and Resources, TB Control), Family Health and Senior Services.
Original Source:
Last Updated: 5/13/2014
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Layton, UT

GiGi's Playhouse Layton, Gigi's Playhouse - Down Syndrome Achievment Centers
471 Heritage Park Boulevard, Suite 4
Layton, UT 84041
Phone: 801-784-7429
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Organization Name: Gigi's Playhouse - Down Syndrome Achievment Centers
Address: 471 Heritage Park Boulevard, Suite 4
Layton, UT 84041
Phone: 801-784-7429
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Email: layton@gigisplayhouse.org
URL: https://gigisplayhouse.org/layton/
Eligibility: Free
Services Provided: GiGi’s Playhouse Layton provides resources, specialized teaching, and support to individuals with Down syndrome, their families and the community. All of our programs are free to our families and are therapeutic in nature. Each of them are designed to work on specific skill development in several areas including speech and language, social development, and fine and gross motor skills.
Provider Profiles: Over 30 locations across the United States and Mexico and 200 inquiries to start new locations all over the world.

National, International
Original Source:
Last Updated: 6/14/2018
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Lehi, UT

Epilepsy Association of Utah
Lehi, UT 84043
Phone: 801-566-5949
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Therapeutic Camps
Address: Lehi, UT 84043
Phone: 801-566-5949
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Therapeutic Camps
URL: http://www.epilepsyut.org
Eligibility: Epilepsy patients and their families.
Wheelchair Accessible: Complete
Services Provided: Provides awareness, education, support services, and advocacy for and in behalf of all those dealing with the many challenges of epilepsy/seizure disorders. A yearly summer camp for youth.
Original Source:
Last Updated: 4/25/2018
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Logan, UT

Options for Independence - Logan
106 East 1120 North
Logan, UT 84341
Phone: 435-753-5353
Service Categories:
Assistive Technology Equipment
Disability Related Sports
Disability/Diagnosis-Specific Advocacy
Independent Living
Services for People with Disabilities
Address: 106 East 1120 North
Logan, UT 84341
Phone: 435-753-5353
TDD: 435-753-5353
Fax: 435-753-5390
Service Categories:
Assistive Technology Equipment
Disability Related Sports
Disability/Diagnosis-Specific Advocacy
Independent Living
Services for People with Disabilities
URL: http://www.optionsind.org
Eligibility: All people of all ages who experience a physical, sensory, cognitive or mental disability are invited to participate in center activities. Eligibility for some opportunities is based on economic need.
Wheelchair Accessible: Complete
Services Provided: A nonresidential Independent Living Center where people with disabilities can learn skills to gain more control and independence over their lives.
Original Source:
Last Updated: 6/8/2017
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Utah State University Disability Resource Center
0101 Old Main Hill
Utah State University
Logan, UT 84322-0101
Phone: 435-797-2444
Service Categories:
Assistive Technology Equipment
College Disability Centers
Disability/Diagnosis-Specific Advocacy
Educational Advocacy
Address: 0101 Old Main Hill
Utah State University
Logan, UT 84322-0101
Phone: 435-797-2444
Toll Free Phone: 800-259-2966
Service Categories:
Assistive Technology Equipment
College Disability Centers
Disability/Diagnosis-Specific Advocacy
Educational Advocacy
URL: http://www.usu.edu/drc/
Services Provided: Provide qualified persons with disabilities equal access to University programs, services and activities as required by the Americans with Disabilities Act and Rehabilitation Act of 1973.
Provider Profiles:
Original Source:
Last Updated: 10/7/2015
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Ogden, UT

Handicap Awareness Assemblies
2070 Pierce Ave.
Ogden, UT 84401
Phone: 801-621-4005
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Address: 2070 Pierce Ave.
Ogden, UT 84401
Phone: 801-621-4005
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Map URL: http://mapit.utah.gov/viewmap?args&mbox=420710:4563396:422710:4565396&mxv=421710&myv=4564396&mlbl=2070%20Pierce%20Ave&tools=yes&mlbl2=Handicap%20Awareness%20Assemblies
Services Provided: 1. Provide information
2. Provide hands-on experiences in using walkers, canes, wheelchairs, etc.
3. Support group information.
4. Speakers Bureau.
5. All disabilities.
Original Source:
Last Updated: 8/9/2013
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Health Access Team, Midtown Community Health Centers
2240 Adams Avenue
Ogden, UT 84403
Phone: 801-393-5355
Service Categories:
Care Coordination Agencies
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Organization Name: Midtown Community Health Centers
Address: 2240 Adams Avenue
Ogden, UT 84403
Phone: 801-393-5355
Fax: 801-394-4609
Service Categories:
Care Coordination Agencies
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
URL: http://midtownchc.org
Eligibility: Open to all
Wheelchair Accessible: Complete
Services Provided: Health care coordination, case management, and prescription assistance for uninsured children, families, and adults including health education and specialty care coordination available at every Midtown Community Health Clinic location from Salt Lake City to Logan. Enrollment Specialist also available by appointment to help with navigation of Medicaid, CHIP, PCN, UPP, and Marketplace plans (ObamaCare).
Original Source:
Last Updated: 11/8/2017
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Pleasant Grove, UT

Alexander Graham Bell Associatin for the Deaf and Hard of Hearing - Utah Chapter
998 West 1930 North
Pleasant Grove, UT 84062
Phone: 801-785-5997
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Speech and Hearing Services
Address: 998 West 1930 North
Pleasant Grove, UT 84062
Phone: 801-785-5997
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Speech and Hearing Services
URL: http://www.agbell-utah.org
Services Provided: Promoting the use of spoken language b children and adults with hearing loss. Advocacy, publications, financial aid, scholarships, numerous programs and services.
Support group.
Original Source:
Last Updated: 2/7/2018
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Price, UT

Active Re-entry Center for Independent Living - Price, Regional Centers for Independent Living
10 South Fairgrounds Road
Price, UT 84501
Phone: 435-637-4950
Service Categories:
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Independent Living
Local Support Groups, Disability/Diag
Non-Emergency Medical Transportation
Services for People with Disabilities
Organization Name: Regional Centers for Independent Living
Address: 10 South Fairgrounds Road
Price, UT 84501
Phone: 435-637-4950
TDD: 435-637-4950
Service Categories:
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Independent Living
Local Support Groups, Disability/Diag
Non-Emergency Medical Transportation
Services for People with Disabilities
Email: active@arecil.org
URL: http://www.arecil.org/index.php
Eligibility: Dagget, Duchesne, Uintah, Carbon, Emery, Grand and San Juan counties
Services Provided: A community based program which assists individuals with disabilities to achieve or maintain self-sufficient, productive lives and live independently within their own communities. Programs include: help in attaining assistive technology; training for those losing their sight; caregiver and grief support groups; PAWS Animal Therapy Program; SCOODEO - a safety training program for those who have no other means of transportation than an electric scooter; PERKIE Travels - a coordinated cancer treatment transportation system to help get people to the Utah Valley area for their radiation treatment; nursing home diversion and transition programs and other programs.
Provider Profiles: USOR, Active Re-Entry serves the seven counties of Eastern Utah, with satellite offices in Moab and Uintah Basin.
There are five other Centers for Independent LIving (CILs) in Utah.
Original Source:
Last Updated: 6/28/2018
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Northeastern Services, Inc.
56 East 100 North
Price, UT 84501
Phone: 435-637-6134
Service Categories:
Disability/Diagnosis-Specific Advocacy
Independent Living
Address: 56 East 100 North
Price, UT 84501
Phone: 435-637-6134
Service Categories:
Disability/Diagnosis-Specific Advocacy
Independent Living
Eligibility: Must be on a program through The Division of Services for People with Disabilities.
Wheelchair Accessible: Complete
Services Provided: 1. Northeastern Services support opportunities for people to achieve independence, enhance self-esteem and sustain a full, quality of life.
2. We are hired by Division of Services for People with Disabilities to teach life skills.
3. Life skills such as budgeting finances, cooking, cleaning, laundry, etc.
4. We work with younger children and young adults to help them live out their dreams.
5. The ultimate goal for our consumers is to achieve independence and become an asset to their community.
Original Source:
Last Updated: 8/5/2013
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Provo, UT

AIDS Coalition of Utah County
1124 West 500 North
Provo, UT 84603
Phone: 801-377-4629
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Food Assistance
Local Support Groups, Disability/Diag
Address: 1124 West 500 North
Provo, UT 84603
Phone: 801-377-4629
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Food Assistance
Local Support Groups, Disability/Diag
URL: http://www.pwacu.org/
Eligibility: Unrestricted
Services Provided: 1. Presentations about HIV/AIDS.
2. Assistance with meals to persons with HIV/AIDS.
3. Advocacy on behalf of persons with HIV/AIDS.
4. Referral to support groups.
Original Source:
Last Updated: 12/15/2014
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Deaf and Hard of Hearing Advocacy Agency
60 East 100 South, Suite 101
Provo, UT 84606
Service Categories:
Disability/Diagnosis-Specific Advocacy
Address: 60 East 100 South, Suite 101
Provo, UT 84606
Service Categories:
Disability/Diagnosis-Specific Advocacy
URL: http://www.dhaa.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=443161:4452511:445161:4454511&mxv=444161&myv=4453511&mlbl=60%20E%20100%20S%20Suite%20101&tools=yes&mlbl2=Deaf%20Advocacy%20Agency
Eligibility: Deaf and hard of hearing
Services Provided: 1. One-to-one counseling (advocating),
2. Education classes
3. Educate the community about deaf and hard of hearing
Original Source:
Last Updated: 2/3/2014
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Salt Lake City, UT

Allies With Families
261 East 300 South Ste 210
Salt Lake City, UT 84111
Phone: 877-477-0764
Service Categories:
Disability/Diagnosis-Specific Advocacy
Family Support Centers/Outreach
Local Support Groups, Disability/Diag
Mental Health, Other Services
Wraparound Facilitation/Community Support
Address: 261 East 300 South Ste 210
Salt Lake City, UT 84111
Phone: 877-477-0764
Fax: 801-521-0872
Service Categories:
Disability/Diagnosis-Specific Advocacy
Family Support Centers/Outreach
Local Support Groups, Disability/Diag
Mental Health, Other Services
Wraparound Facilitation/Community Support
URL: http://www.allieswithfamilies.org
Languages Spoken: Spanish services available
Eligibility: Brothers and sisters (ages 7 to 13) of a child with special needs.
Services Provided: Provides information and support to families; wellness education and training: emotional support, training, and resource information for families with children with emotional, behavioral, and mental health disabilities such as depression, ADD, autism, etc. Partners with Utah Family Coalition to provide Family Resource Facilitators.
SIbShops (workshops for siblings ages 7 - 13) throughout Utah
Diagnosis-Specific Packets -- diagnosis packets are available for the following diagnoses:
ADHD
Anxiety Disorder
Asperger's Syndrome
Autism
Bipolar Disorder
Childhood Schizophrenia
Conduct Disorder
Depression
Eating Disorders
General Mental Health
Learning Disability
Obsessive Compulsive Disorder
Oppositional Defiant Disorder
Panic Disorder
Post-Traumatic Disorder
Reactive Attachment Disorder
Schizoaffective Disorder
Substance Abuse
Suicide Prevention
Tourette Syndrome
Original Source:
Last Updated: 12/11/2017
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American Cancer Society, Great West Division
375 East 100 South
Salt Lake City, UT 84111
Phone: 801-493-4700
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Address: 375 East 100 South
Salt Lake City, UT 84111
Phone: 801-493-4700
Toll Free Phone: 800-227-2345
Fax: 801-483-1558
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
URL: http://www.cancer.org
Eligibility: Individuals with a cancer diagnosis, their family and friends.
Wheelchair Accessible: Complete
Services Provided: Nationwide, community-based, voluntary health organization dedicated to eliminating cancer as a major health problem by preventing cancer, saving lives, and diminishing suffering from cancer through research, education, advocacy, and service.
Original Source:
Last Updated: 3/14/2018
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Arthritis Foundation, Utah/Idaho Chapter
4424 South 700 East Ste 180
Salt Lake City, UT 84107
Phone: 801-536-0990
Service Categories:
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
Address: 4424 South 700 East Ste 180
Salt Lake City, UT 84107
Phone: 801-536-0990
Toll Free Phone: 888-391-9389
Fax: 801-536-0991
Service Categories:
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
URL: http://www.arthritis.org/utah
Eligibility: Individuals, family, and healthcare providers of those affected with arthritis.
Services Provided: Arthritis Foundation funds research and provides services including information on arthritis, doctor referral list, a magazine, support groups, self help classes, videos and exercise classes. The Arthritis Foundation Utah/Idaho Chapter serves Idaho and Utah.
Provider Profiles: Internet Resources
Original Source:
Last Updated: 3/28/2018
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Cystic Fibrosis Foundation, Utah and Idaho, Cystic Fibrosis Foundation
124 South 400 East Ste 250
Salt Lake City, UT 84111
Phone: 801-532-2335
Service Categories:
Disability/Diagnosis-Specific Advocacy
Organization Name: Cystic Fibrosis Foundation
Address: 124 South 400 East Ste 250
Salt Lake City, UT 84111
Phone: 801-532-2335
Fax: 801-364-0237
Service Categories:
Disability/Diagnosis-Specific Advocacy
URL: http://www.cff.org
Eligibility: Cystic Fibrosis patients, their families and care team
Services Provided: A parent driven and administered educational, support, and advocacy site for families of children with cystic fibrosis followed at the Intermountain CF Center.

Cystic Fibrosis Foundation funds research and supports the development of new drugs to fight Cystic Fibrosis to improve the quality of life for those with this condition to ultimately find a cure.
Original Source:
Last Updated: 6/7/2018
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Disability Support Center for Families
1574 West 1700 South Ste 1-A, Utah State University
Salt Lake City, UT 84104
Phone: 801-973-0129
Service Categories:
College Disability Centers
Disability/Diagnosis-Specific Advocacy
Information & Referral / Hotlines
Local Support Groups, Disability/Diag
Parent/Family Education
Address: 1574 West 1700 South Ste 1-A, Utah State University
Salt Lake City, UT 84104
Phone: 801-973-0129
Fax: 801-973-6964
Service Categories:
College Disability Centers
Disability/Diagnosis-Specific Advocacy
Information & Referral / Hotlines
Local Support Groups, Disability/Diag
Parent/Family Education
URL: http://www.disabilitysupportcenter.org
Wheelchair Accessible: Complete
Services Provided: Provide information and referral to local disability supports that are beneficial to individuals with developmental delays.
Original Source:
Last Updated: 3/29/2018
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Disabled Rights Action Committee
339 East 3900 South Ste 205
Salt Lake City, UT 84107
Phone: 801-685-8214
Service Categories:
Community Advocacy Agencies
Disability/Diagnosis-Specific Advocacy
State Institutions for Individuals with Disabilities
Address: 339 East 3900 South Ste 205
Salt Lake City, UT 84107
Phone: 801-685-8214
Toll Free Phone: 800-478-9314
Fax: 801-685-8216
Service Categories:
Community Advocacy Agencies
Disability/Diagnosis-Specific Advocacy
State Institutions for Individuals with Disabilities
Wheelchair Accessible: Complete
Services Provided: Provides information, referral, education, and training related to compliance with Americans with Disabilities Act, Fair Housing Act, and other disability-related rights.
Original Source:
Last Updated: 6/29/2017
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Edward G. Callister Foundation
10 East South Temple #900
Salt Lake City, UT 84133
Phone: 801-366-4673
Service Categories:
Disability/Diagnosis-Specific Advocacy
Substance Use Disorder Treatment
Address: 10 East South Temple #900
Salt Lake City, UT 84133
Phone: 801-366-4673
Toll Free Phone: 866-633-4673
Fax: 801-397-0714
Service Categories:
Disability/Diagnosis-Specific Advocacy
Substance Use Disorder Treatment
Wheelchair Accessible: Complete
Services Provided: Provides support for families who have a substance-abusing family member. The foundation is dedicated to: (1) increasing public awareness about conditions leading to substance abuse, (2) supporting research and education about addictive disease, and (3) providing assessment and clinical services for those affected by the disease.
Provider Profiles: 801 292-2632
Original Source:
Last Updated: 12/19/2016
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Family to Family Network - Salt Lake, Utah Parent Center
230 West 200 South Ste 1101
Salt Lake City, UT 84101
Phone: 801-272-1051
Service Categories:
Disability/Diagnosis-Specific Advocacy
Information & Referral / Hotlines
Local Support Groups, Disability/Diag
Organization Name: Utah Parent Center
Address: 230 West 200 South Ste 1101
Salt Lake City, UT 84101
Phone: 801-272-1051
Toll Free Phone: 800-468-1160
Fax: 801-272-8907
Service Categories:
Disability/Diagnosis-Specific Advocacy
Information & Referral / Hotlines
Local Support Groups, Disability/Diag
URL: http://www.utahfamilytofamilynetwork.org
Eligibility: Must have a disability or a family member who is disabled.
Services Provided: The Family to Family Network is a grassroots volunteer organization supported by the Utah Parent Center. The networks are composed of family members from across the state that have a relative with a disability. The Mission of the Networks is to educate, strengthen, and support families of persons with disabilities.
The Networks provide: local monthly meetings, information and referral, family-to-family support, advocacy for families, and information on how to work with the Division of Services for People with Disabilities.
Provider Profiles: Networks located across Utah
Transition Workshops offered through Family to Family Network (F2F)
Original Source:
Last Updated: 5/22/2018
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Friends of MS Charities
396 West Ironwood Drive (2550 S)
Salt Lake City, UT 84115
Phone: 877-493-0120
Service Categories:
Disability/Diagnosis-Specific Advocacy
Address: 396 West Ironwood Drive (2550 S)
Salt Lake City, UT 84115
Phone: 877-493-0120
Toll Free Phone: 877-493-0120
Fax: 801-463-4946
Service Categories:
Disability/Diagnosis-Specific Advocacy
URL: http://www.donatemsut.org/
Eligibility: Items must be in sellable condition and light/small enough for one person to lift into truck.
Services Provided: Collects donations of clothing and household items, which are sold to fund services for people with Multiple Sclerosis.
Original Source:
Last Updated: 3/12/2018
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Intermountain Phenylketonuria and Allied Disorders Association (IPAD)
Salt Lake City, UT
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Address: Salt Lake City, UT
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
URL: http://www.go-ipad.org/
Services Provided: Supported by University Health Care, this nonprofit organization provides support and services to individuals, in the Intermountain West, with PKU and related disorders. Allied disorders include homocystinuria, maple syrup urine disease, organic acidemias, tyrosinemia, urea cycle disorders, and a host of other inborn metabolic errors.
Original Source:
Last Updated: 11/2/2016
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Juvenile Diabetes Research Foundation International
132 South 600 East Ste 100
Salt Lake City, UT 84102
Phone: 800-533-2873
Service Categories:
Disability/Diagnosis-Specific Advocacy
Address: 132 South 600 East Ste 100
Salt Lake City, UT 84102
Phone: 800-533-2873
Fax: 801-530-0670
Service Categories:
Disability/Diagnosis-Specific Advocacy
URL: http://www.jdrf.org
Eligibility: None
Services Provided: The leading global organization focused on type 1 diabetes (T1D) research. Driven by passionate, grassroots volunteers connected to children, adolescents, and adults with this disease, JDRF is the largest charitable supporter of T1D research.
Original Source:
Last Updated: 6/12/2017
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National Multiple Sclerosis Society - Utah/Southern Idaho Chapter
1440 Foothill Drive Ste 200
Salt Lake City, UT 84108
Phone: 801-424-0113
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
Address: 1440 Foothill Drive Ste 200
Salt Lake City, UT 84108
Phone: 801-424-0113
Toll Free Phone: 800-344-4867
Fax: 801-424-0122
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
URL: http://www.nationalmssociety.org/chapters/utu/index.aspx
Eligibility: Individuals with MS and their families
Wheelchair Accessible: Complete
Services Provided: Provides a wide variety of programs, fundraisers, activities, and services throughout the area to people with MS, their families, and friends.
Original Source:
Last Updated: 12/14/2017
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Organization for Fatigue and Fibromyalgia Education and Research
1002 East South Temple Ste 408
Salt Lake City, UT 84102
Phone: 801-328-8080
Service Categories:
Community Advocacy Agencies
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
Address: 1002 East South Temple Ste 408
Salt Lake City, UT 84102
Phone: 801-328-8080
Fax: 1-866-555-1122
Service Categories:
Community Advocacy Agencies
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
URL: http://www.offerutah.org
Eligibility: None
Wheelchair Accessible: Complete
Services Provided: Provides information on chronic fatigue and fibromyalgia through monthly meetings and newsletter.
Original Source:
Last Updated: 12/18/2014
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People with AIDS Coalition of Utah
116 North 800 West
Salt Lake City, UT 84116
Phone: 801-484-2205
Service Categories:
Departments of Health, Local
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Address: 116 North 800 West
Salt Lake City, UT 84116
Phone: 801-484-2205
Fax: 801-484-2665
Service Categories:
Departments of Health, Local
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
URL: http://www.facebook.com/People-With-AIDS-Coalition-of-Utah-120935004631773/
Eligibility: Open to the public
Wheelchair Accessible: Complete
Services Provided: Provides educational and support services that enhance the quality of life for all people impacted by HIV/AIDS.
Original Source:
Last Updated: 6/4/2018
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Sego Lily Center for the Abused Deaf
452 East 3900 South
Salt Lake City, UT 84107
Phone: 801-614-7885
Service Categories:
Disability/Diagnosis-Specific Advocacy
Domestic Violence Intervention Programs
Address: 452 East 3900 South
Salt Lake City, UT 84107
Phone: 801-614-7885
Fax: 801-293-3263
Service Categories:
Disability/Diagnosis-Specific Advocacy
Domestic Violence Intervention Programs
URL: http://www.slcad.org/
Eligibility: Victim of abuse must be Deaf, Deaf/Blind, or Hard of Hearing (family member can be hearing).
Services Provided: Provides a 24-hour emergency hotline, information, advocacy, counseling and referral for Deaf/Deaf Blind or Hard of Hearing (HH) victims of domestic violence or sexual assault.
Original Source:
Last Updated: 6/12/2017
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Special Education, Utah State Board of Education
250 East 500 South
P.O. Box 144200
Salt Lake City, UT 84114-4200
Phone: 801-538-7587
Service Categories:
Disability/Diagnosis-Specific Advocacy
Public Schools
School Districts
Organization Name: Utah State Board of Education
Address: 250 East 500 South
P.O. Box 144200
Salt Lake City, UT 84114-4200
Phone: 801-538-7587
Fax: 801-538-7991
Service Categories:
Disability/Diagnosis-Specific Advocacy
Public Schools
School Districts
URL: http://www.schools.utah.gov/sars/
Eligibility: Identified students ages 3 - 22 in Utah schools to comply with the requirements outlined in the Individuals with Disabilities Education Act (IDEA) 2004.
Services Provided: Support and services for students with disabilities, ages 3-22; assessment, instructional support, and transition services; links to community organizations and school districts; and information about school rules and reports, events, and services.
Provider Profiles: Utah's Transition Action Guide for Students with Disabilities: http://health.utah.gov/cshcn/pdf/IntSrv/Transition%20Action%20Guide.pdf
Original Source:
Last Updated: 9/20/2017
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Special Olympics Utah
1400 South Foothill Drive Ste 238
Salt Lake City, UT 84108
Phone: 801-363-1111
Service Categories:
Disability Related Sports
Disability/Diagnosis-Specific Advocacy
Social & Recreational Opportunities
Address: 1400 South Foothill Drive Ste 238
Salt Lake City, UT 84108
Phone: 801-363-1111
Toll Free Phone: 800-722-1589
Fax: 801-363-1524
Service Categories:
Disability Related Sports
Disability/Diagnosis-Specific Advocacy
Social & Recreational Opportunities
URL: http://sout.org/sports-and-fitness-programs/local-programs/
Eligibility: 8 years and older with intellectual disability, throughout Utah.
Wheelchair Accessible: Complete
Services Provided: Provides year-round sports training and athletic competition in a variety of Olympic-type sports for children and adults with intellectual disabilities, giving them continuing opportunities to develop physical fitness, demonstrate courage, experience joy, and participate in a sharing of gifts, skills, and friendship with their families, other Special Olympics athletes, and the community.
Provider Profiles: Programs throughout Utah: North Area, North East Area, Metro Area, Central Area, South Central Area, South East Area, South Area.
Original Source:
Last Updated: 4/2/2018
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Utah AIDS Foundation
1408 South 1100 East
Salt Lake City, UT 84105
Phone: 801-487-2323
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
Address: 1408 South 1100 East
Salt Lake City, UT 84105
Phone: 801-487-2323
Fax: 801-486-3978
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
URL: http://www.utahaids.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=426478:4508888:428478:4510888&mxv=427478&myv=4509888&mlbl=1408%20South%201100%20East&tools=yes&mlbl2=Utah%20Aids%20Foundation
Eligibility: Case managers will refer clients to statewide locations of HIV testing, resource referrals to physicians, attorneys, dentists, mental health professionals, and medical services; limited crisis intervention; mailings of AIDS-related materials.
Wheelchair Accessible: Entry and Bathroom(s)
Services Provided: Offers assistance and expertise to anyone struggling with the complex issues that surround HIV. Works with community members to form partnerships that mend health, promote compassion, and extend companionship to everyone who has been affected by HIV.
Original Source:
Last Updated: 4/2/2018
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Utah Autism Initiative (UAI), Autism Council of Utah; CSHCN, Utah Department of Health
44 N Mario Capecchi Drive
PO Box 144610
Salt Lake City, UT 84113-4610
Service Categories:
Disability/Diagnosis-Specific Advocacy
State Institutions for Individuals with Disabilities
Organization Name: Autism Council of Utah; CSHCN, Utah Department of Health
Address: 44 N Mario Capecchi Drive
PO Box 144610
Salt Lake City, UT 84113-4610
Service Categories:
Disability/Diagnosis-Specific Advocacy
State Institutions for Individuals with Disabilities
Email: utahautismcoalition@gmail.com
URL: http://www.health.utah.gov/cshcn/programs/autism.html
Services Provided: The Utah Autism Initiative (UAI) committee is a state inter-agency advisory panel of experts in the field of ASD-related research and treatment. UAI is formed solely to benefit the citizens of Utah affected by or having an interest in ASD. The UAI maintains no commercial interests whatsoever in any party outside the membership of the UAI.
Provider Profiles: For questions, please contact Colin Kingsbury, Autism Systems Coordinator
with the Bureau of Children with Special Health Care Needs.

Meetings are quarterly.
Original Source:
Last Updated: 9/21/2017
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Utah Cancer Foundation
1121 East 3900 South, Suite C-230
Salt Lake City, UT 84124
Phone: 801-281-6861
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Address: 1121 East 3900 South, Suite C-230
Salt Lake City, UT 84124
Phone: 801-281-6861
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
URL: http://www.utahcancerfoundation.com
Eligibility: Cancer patients
Services Provided: Provides support to cancer patients and their families during diagnosis, treatment and recovery and to enhance their quality of life throughout these stages of the cancer experience.
Original Source:
Last Updated: 4/4/2018
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Utah Cancer Registry, University of Utah
650 Komas Drive Ste 106B
Salt Lake City, UT 84108
Phone: 801-581-8407
Service Categories:
Disability/Diagnosis-Specific Advocacy
Organization Name: University of Utah
Address: 650 Komas Drive Ste 106B
Salt Lake City, UT 84108
Phone: 801-581-8407
Fax: 801-581-4560
Service Categories:
Disability/Diagnosis-Specific Advocacy
URL: http://ucr.utah.edu
Services Provided: Promotes public health in Utah by maintaining cancer data, which makes the monitoring of trends in incidence and mortality as well as the evaluation of prevention and control measures possible.
Original Source:
Last Updated: 4/21/2014
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Utah Developmental Disabilities Council, Utah State Government
155 South 300 West Ste 100
Salt Lake City, UT 84101
Phone: 801-245-7350
Service Categories:
Disability/Diagnosis-Specific Advocacy
State Advocacy Agencies
Organization Name: Utah State Government
Address: 155 South 300 West Ste 100
Salt Lake City, UT 84101
Phone: 801-245-7350
TDD: --711
Fax: 801-533-3968
Service Categories:
Disability/Diagnosis-Specific Advocacy
State Advocacy Agencies
URL: http://www.utahddcouncil.org/
Map URL: http://mapit.utah.gov/viewmap?args&mbox=423165:4511924:425165:4513924&mxv=424165&myv=4512924&mlbl=155%20so%20300%20w%20suite%20Nbr%20100&tools=yes&mlbl2=Disabilities%20Utah%20Governors%20Council
Eligibility: Persons with developmental disabilities and their families
Wheelchair Accessible: Complete
Services Provided: Promotes consumer and family directed services that increase self-determination in individuals with disabilities and their families.
Original Source:
Last Updated: 6/21/2018
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Utah Down Syndrome Foundation
PO Box 675
Salt Lake City, UT 84110
Phone: 801-503-5086
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Address: PO Box 675
Salt Lake City, UT 84110
Phone: 801-503-5086
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
URL: http://www.udsf.org
Services Provided: Provides outreach, training, support, education, information, and activities for individuals with Down syndrome, their parents and families, and the community.
Original Source:
Last Updated: 4/24/2018
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Utah Governor's Committee on Employment of People with Disabilities
1595 West 500 South
Salt Lake City, UT 84104
Phone: 801-887-9392
Service Categories:
Disability Related Employment Programs
Disability/Diagnosis-Specific Advocacy
State Advocacy Agencies
State Institutions for Individuals with Disabilities
Address: 1595 West 500 South
Salt Lake City, UT 84104
Phone: 801-887-9392
TDD: 801-538-7530
Fax: 801-887-9389
Service Categories:
Disability Related Employment Programs
Disability/Diagnosis-Specific Advocacy
State Advocacy Agencies
State Institutions for Individuals with Disabilities
URL: http://www.goodworkutah.org/
Map URL: http://mapit.utah.gov/viewmap?args&mbox=420063:4511105:422063:4513105&mxv=421063&myv=4512105&mlbl=1595%20West%20500%20South&tools=yes&mlbl2=Disabilities%20Ut%20Govs%20Committee
Eligibility: Businesses that want information on employing persons with disabilities
Wheelchair Accessible: Complete
Services Provided: Committee dedicated to assist and encourage the hiring of people with disabilities
Original Source:
Last Updated: 3/29/2018
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Utah Hemophilia Foundation
772 East 3300 South Ste 210
Salt Lake City, UT 84106
Phone: 877-463-6893
Service Categories:
Disability Related Sports
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Therapeutic Camps
Address: 772 East 3300 South Ste 210
Salt Lake City, UT 84106
Phone: 877-463-6893
Fax: 801-746-2488
Service Categories:
Disability Related Sports
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Therapeutic Camps
URL: http://www.hemophiliautah.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=425963:4504451:427963:4506451&mxv=426963&myv=4505451&mlbl=880%20East%203375%20South&tools=yes&mlbl2=Hemophilia%20Foundation%20Utah
Services Provided: Provides education, advocacy, outreach, and networking for people with bleeding disorders. These services empower individuals with bleeding disorders and their families to lead healthier and more self-sufficient lives.
Original Source:
Last Updated: 2/9/2016
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Utah Independent Living Center - Salt Lake
3445 South Main Street
Salt Lake City, UT 84115-4418
Phone: 801-466-5565
Service Categories:
Disability/Diagnosis-Specific Advocacy
Independent Living
Services for People with Disabilities
Address: 3445 South Main Street
Salt Lake City, UT 84115-4418
Phone: 801-466-5565
Toll Free Phone: 800-355-2195
Fax: 801-466-2363
Service Categories:
Disability/Diagnosis-Specific Advocacy
Independent Living
Services for People with Disabilities
URL: http://www.uilc.org
Eligibility: Persons 18+ years old, Salt Lake, Summit and Tooele counties
Wheelchair Accessible: Complete
Services Provided: Private, nonprofit, non–residential facility that teaches independent living skills to people with disabilities. Grant funding for assistive technology.
Provider Profiles: Also a Tooele Satellite Office
Original Source:
Last Updated: 6/28/2018
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Utah Prader-Willi Syndrome Association
2652 E. Nottingham Way
Salt Lake City, UT 84108
Phone: 801-582-0998
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Address: 2652 E. Nottingham Way
Salt Lake City, UT 84108
Phone: 801-582-0998
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
URL: http://www.upwsa.org/
Services Provided: Provides families and professionals with newsletters; conference information; local event information; local services listings; links to support groups for youth, teens, siblings, grandparents and more; and links to other organizations. For more information, contact:
Lisa Thornton (Legal Issues - President, Utah PWSA, 801-582-0998)
Michelle Holbrook (Education Specialist - Utah PWSA, 801-768-8851).
Original Source:
Last Updated: 3/11/2015
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Utah Pride Center
255 East 400 South Ste 200
Salt Lake City, UT 84111
Phone: 801-539-8800
Service Categories:
Crisis Intervention Mental Health
Disability/Diagnosis-Specific Advocacy
Outpatient Community Mental Health Agencies
Youth Development
Address: 255 East 400 South Ste 200
Salt Lake City, UT 84111
Phone: 801-539-8800
Toll Free Phone: 888-874-2743
Fax: 801-521-5215
Service Categories:
Crisis Intervention Mental Health
Disability/Diagnosis-Specific Advocacy
Outpatient Community Mental Health Agencies
Youth Development
URL: http://www.utahpridecenter.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=423170:4513192:425170:4515192&mxv=424170&myv=4514192&mlbl=361%20North%20300%20West&tools=yes&mlbl2=Gay%20&%20Lesbian%20Community%20Center%20Of%20Utah
Eligibility: Youth ages 14 - 17; adults ages 18 and up
Wheelchair Accessible: Entry and Bathroom(s)
Services Provided: Plays the vital role of providing information, programs, referrals, and services to a diverse LGBTQ community in the Salt Lake City metropolitan area. The staff of the Center disseminates information on a wide variety of issues and advocates for social change for the GLBTQ community.
Original Source:
Last Updated: 4/3/2018
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Sandy, UT

Learning Disabilities Associations of Utah
PO Box 900726
Sandy, UT 84090
Phone: 801-553-9156
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Address: PO Box 900726
Sandy, UT 84090
Phone: 801-553-9156
Service Categories:
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
URL: http://www.ldau.org/
Eligibility: Anyone looking for resources for learning disabilities (testing, tutoring, disability lawyers, education and support, rehabilitation services).
Wheelchair Accessible: Complete
Services Provided: The Learning Disabilities Association of Utah supports, informs, and empowers individuals with learning disabilities and the people who work with them. Does not provide direct services; provides referrals and lobbies/advocates on a state level.
Original Source:
Last Updated: 3/28/2018
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Springville, UT

Legislative Coalition for People with Disabilities
P.O. Box 120
Springville, UT 84663-0120
Phone: 801-580-6091
Service Categories:
Community Advocacy Agencies
Disability/Diagnosis-Specific Advocacy
Address: P.O. Box 120
Springville, UT 84663-0120
Phone: 801-580-6091
Service Categories:
Community Advocacy Agencies
Disability/Diagnosis-Specific Advocacy
URL: http://www.lcpdut.org/
Services Provided: LCPD provides a forum to educate policy makers about the real needs of people with disabilities. The mission of the Legislative Coalition for People with Disabilities is to advocate for public policy affecting all people in the State of Utah who have disabilities. Become a member and affect change!
Original Source:
Last Updated: 4/18/2018
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St. George, UT

Arc of Washington County
523 Sunland Drive Ste A
St. George, UT 84790
Phone: 435-619-5067
Service Categories:
Disability/Diagnosis-Specific Advocacy
Address: 523 Sunland Drive Ste A
St. George, UT 84790
Phone: 435-619-5067
Toll Free Phone: 800-643-6913
Fax: 435-673-5265
Service Categories:
Disability/Diagnosis-Specific Advocacy
URL: http://www.thearc.org
Eligibility: People 18 years old or older with learning or developmental disabilities.
Wheelchair Accessible: Complete
Services Provided: Advocates for people with developmental, cognitive, intellectual and related disabilities and their families through support, outreach, education and legislation.
Original Source:
Last Updated: 7/31/2017
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MS (Multiple Sclerosis) Support Group
Call for information
St. George, UT 84770
Phone: 435-674-3533
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
Address: Call for information
St. George, UT 84770
Phone: 435-674-3533
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Local Support Groups, Disability/Diag
Services Provided:
Original Source:
Last Updated: 10/25/2013
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Tri-State HIV/AIDS Task Force
1036 East Riverside Drive
Doctor's Volunteer Clinic of St George
St. George, UT 84790
Phone: 801-707-6006
Service Categories:
Departments of Health, Local
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Address: 1036 East Riverside Drive
Doctor's Volunteer Clinic of St George
St. George, UT 84790
Phone: 801-707-6006
Service Categories:
Departments of Health, Local
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
URL: http://www.facebook.com/pages/Tri-State-HivAids-Task-Force/497300290283867
Eligibility: Anyone over 16 years of age. If under 16 years of age, they need parental consent
Services Provided: Work to educate about HIV prevention, to provide support for persons living with HIV/AIDS and their caregivers, and to increase access to free HIV testing and prevention materials and supplies.


Original Source:
Last Updated: 12/8/2014
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Taylorsville, UT

Muscular Dystrophy Association
849 West Levoy Dr Ste 210
Taylorsville, UT 84123
Phone: 801-278-6200
Service Categories:
Clinics, Other
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Therapeutic Camps
Address: 849 West Levoy Dr Ste 210
Taylorsville, UT 84123
Phone: 801-278-6200
Fax: 801-278-2499
Service Categories:
Clinics, Other
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Therapeutic Camps
URL: http://www.mda.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=428019:4501465:430019:4503465&mxv=429019&myv=4502465&mlbl=4578%20South%20Highland%20Dr%20Nbr%20300&tools=yes&mlbl2=Muscular%20Dystrophy%20Association%20Inc
Eligibility: Anyone diagnosed with one of the 43 diseases in MDA's service program.
Wheelchair Accessible: Complete
Services Provided: A voluntary health agency that works to combat over 43 neuromuscular diseases and is committed to finding treatments and cures while supporting a comprehensive program of direct patient services and clinical care.
Original Source:
Last Updated: 4/12/2017
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Utah Association of the Deaf
5709 South 1500 West
Taylorsville, UT 84123
Phone: 801-657-5207
Service Categories:
Agency Based Libraries/Resource Centers
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Address: 5709 South 1500 West
Taylorsville, UT 84123
Phone: 801-657-5207
Fax: 801-288-9899
Service Categories:
Agency Based Libraries/Resource Centers
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
URL: http://www.uad.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=420065:4498803:422065:4500803&mxv=421065&myv=4499803&mlbl=5709%20South%201500%20West&tools=yes&mlbl2=Deaf%20Utah%20Association%20For%20The%20Inc
Eligibility: None
Wheelchair Accessible: Complete
Services Provided: Advocates for and provides services which aim to improve the general welfare of the deaf and hard of hearing people in Utah.
Original Source:
Last Updated: 4/12/2017
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West Valley City, UT

Comunidades Unidas /Communities United
1750 West Research Way (2770 South) Suite 102
West Valley City, UT 84119
Phone: 801-487-4143
Service Categories:
Adult Education
Departments of Health, Local
Diabetes Clinics
Disability/Diagnosis-Specific Advocacy
Ethnic, Religious, Cultural Support
Food Assistance
Parent/Family Education
Pregnancy-related, Other
Address: 1750 West Research Way (2770 South) Suite 102
West Valley City, UT 84119
Phone: 801-487-4143
Toll Free Phone: 801-487-4145
Fax: 801-487-4145
Service Categories:
Adult Education
Departments of Health, Local
Diabetes Clinics
Disability/Diagnosis-Specific Advocacy
Ethnic, Religious, Cultural Support
Food Assistance
Parent/Family Education
Pregnancy-related, Other
URL: http://www.cuutah.org
Eligibility: Serves the underrepresented Latino population
Wheelchair Accessible: Complete
Services Provided: Provides a variety of programs focusing on both community well-being and community organizing to help individuals from the immigrant and refugee communities become healthy, self-reliant, and participatory members of society.
Original Source:
Last Updated: 3/29/2018
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Woods Cross, UT

Utah Council of the Blind
1301 West 500 South
Woods Cross, UT 84087
Phone: 801-292-1156
Service Categories:
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Scholarships
Address: 1301 West 500 South
Woods Cross, UT 84087
Phone: 801-292-1156
Toll Free Phone: 800-273-4569
Fax: 801-292-6046
Service Categories:
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Local Support Groups, Disability/Diag
Scholarships
Email: info@utahcounciloftheblind.org
URL: http://www.utahcounciloftheblind.org
Map URL: http://mapit.utah.gov/viewmap?args&mbox=421795:4525117:423795:4527117&mxv=422795&myv=4526117&mlbl=1301%20West%20500%20South&tools=yes&mlbl2=Blind%20Utah%20Council%20Of%20The
Eligibility: Must be legally blind. Membership required for some programs.
Wheelchair Accessible: Complete
Services Provided: Programs to address the challenges faced by Utah's blind and visually impaired.
Here are some of the services and programs we offer:
Personal Braille Program
Ceramic Arts Class
Teacher/Training in home independent living Program
Adaptive Technology and Assistive Technology Training
Reader Program to read important papers, mail and other items
Travel Program to provide assistance and discounted cab fares for members
Presentation Committee for live speaking engagements and assemblies
Orientation and Mobility provided by Teacher/Trainer Teams
Braille: Grade One, Grade Two
Employment Training for Blind Patrons and Resume Building
Original Source:
Last Updated: 4/24/2018
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Nationwide

Academy for Eating Disorders
11130 Sunrise Valley Drive Ste 350
Reston, VA 20191
Phone: 703-234-4079
Service Categories:
Disability/Diagnosis-Specific Advocacy
Address: 11130 Sunrise Valley Drive Ste 350
Reston, VA 20191
Phone: 703-234-4079
Fax: 703-435-4390
Service Categories:
Disability/Diagnosis-Specific Advocacy
URL: http://www.aedweb.org
Eligibility: Open to the public.
Services Provided: Provides research, educational forums, publications, subject matter experts and current information on treatment and prevention of eating disorders.
Original Source:
Last Updated: 2/21/2018
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Alexander Graham Bell Assoc for the Deaf & Hard of Hearing
3417 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
Service Categories:
Child Advocacy
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Scholarships
Speech - Language Pathologists
Address: 3417 Volta Place NW
Washington, DC 20007
Phone: 202-337-5220
TDD: 202-337-5221
Fax: 202-337-8314
Service Categories:
Child Advocacy
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Scholarships
Speech - Language Pathologists
URL: http://www.agbell.org
Eligibility: Individuals who are deaf or hard of hearing.
Services Provided: A resource center on hearing loss and spoken language approaches and related issues. Promotes opportunities and rights of individuals who are deaf or hard of hearing to learn to use, maintain, and improve all aspects of their verbal communication, including their abilities to use residual hearing and process both spoken and written language. Offers scholarship/ financial award opportunities, membership, information, and publications.
Original Source:
Last Updated: 12/18/2017
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American Diabetes Association
2451 Crystal Drive, Suite 900
Arlington, VA 22202
Service Categories:
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
Address: 2451 Crystal Drive, Suite 900
Arlington, VA 22202
Toll Free Phone: 800-342-2383
Service Categories:
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
URL: http://www.diabetes.org/
Services Provided: We lead the fight against the deadly consequences of diabetes and fight for those affected by diabetes.
We fund research to prevent, cure and manage diabetes.
We deliver services to hundreds of communities.
We provide objective and credible information.
We give voice to those denied their rights because of diabetes.

Website offers education, legal rights, health insurance, tips for caregivers, etc.
Original Source:
Last Updated: 6/25/2018
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American Kidney Fund
11921 Rockville Pike Ste 300
Rockville, MD 20852
Phone: 800-638-8299
Service Categories:
Disability/Diagnosis-Specific Advocacy
Medical Care Expense Assistance
Address: 11921 Rockville Pike Ste 300
Rockville, MD 20852
Phone: 800-638-8299
Toll Free Phone: 866-300-2900
Service Categories:
Disability/Diagnosis-Specific Advocacy
Medical Care Expense Assistance
URL: http://www.kidneyfund.org/
Eligibility: Kidney patients and health care professionals.
Services Provided: Provides health information, education, financial assistance, advocacy and resource referrals for patients and health care professionals in English and Spanish. Programs for children include summer enrichment activities and the annual Calendar Kids Art Contest.
Original Source:
Last Updated: 4/3/2018
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American Society for Deaf Children (ASDC)
P.O. Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Address: P.O. Box 3355
Gettysburg, PA 17325
Phone: 717-334-7992
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
URL: http://www.deafchildren.org
Services Provided: Families and professionals committed to educating, empowering, and supporting parents and families of children who are deaf or hard-of-hearing. Help find meaningful communication options, particularly through the competent use of sign language, in their home, school, or community.
Original Source:
Last Updated: 12/19/2017
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Cancer Care
275 Seventh Avenue
New York, NY 10001
Phone: 212-712-8400
Service Categories:
Disability/Diagnosis-Specific Advocacy
Medical Care Expense Assistance
National Support Services, Disab/Diag
Address: 275 Seventh Avenue
New York, NY 10001
Phone: 212-712-8400
Toll Free Phone: 800-813-4673
Fax: 212-712-8495
Service Categories:
Disability/Diagnosis-Specific Advocacy
Medical Care Expense Assistance
National Support Services, Disab/Diag
URL: http://www.cancercare.org
Eligibility: Cancer patients, survivors and caregivers. Liimited grants for certain expenses related to cancer treatment.
Services Provided: Provides online, telephone and in-person counseling, support groups, educational workshops, publications, financial and co-payment assistance. All services are provided by oncology social workers and world-leading cancer experts.
Original Source:
Last Updated: 3/7/2018
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CdLS Foundation, Cornelia de Lange Syndrome Foundation
302 West Main Street #100
Avon, CT 06001
Phone: 860-676-8166
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Organization Name: Cornelia de Lange Syndrome Foundation
Address: 302 West Main Street #100
Avon, CT 06001
Phone: 860-676-8166
Toll Free Phone: 800-753-2357
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
URL: http://www.cdlsusa.org
Services Provided: A family support organization that exists to ensure early and accurate diagnosis of CdLS, promote research into the causes and manifestations of the syndrome, and help people with a diagnosis of CdLS, and others with similar characteristics, make informed decisions throughout their lives.
Provider Profiles: M - F 8:30 - 5 ET
Original Source:
Last Updated: 12/18/2017
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Crohn's & Colitis Foundation of America
733 Third Ave Ste 510
New York, NY 10017
Phone: 888-694-8872
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Address: 733 Third Ave Ste 510
New York, NY 10017
Phone: 888-694-8872
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
URL: http://www.ccfa.org
Eligibility: Crohn's and Colitis patients, their families and medical professionals.
Services Provided: Funds research studies at major medical institutions, nurtures investigators at the early stages of their careers, finances underdeveloped areas of research, and provides educational workshops and programs related to Crohn's Disease and colitis.
Provides online and telephone access to disease educational materials, support groups, physician referrals and other resources.
Original Source:
Last Updated: 4/17/2018
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Epilepsy Foundation
8301 Professional Place East Ste 200
Hyattsville, MD 20785-2353
Phone: 866-748-8008
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Internet Information Resources
Address: 8301 Professional Place East Ste 200
Hyattsville, MD 20785-2353
Phone: 866-748-8008
Toll Free Phone: 800-332-1000
Fax: 301-459-1569
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Internet Information Resources
Email: ContactUs@efa.org
URL: http://www.epilepsy.com
Eligibility: Individuals with epilepsy, their families and friends.
Services Provided: Provides information, advocacy, and assistance finding doctors, legal assistance, support groups and transportation reimbursement. Free educational material in English and Spanish.
Provider Profiles: Spanish Speakers Phone number: 866-748-8008
Original Source:
Last Updated: 3/28/2018
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Genetic Alliance
4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008
Phone: 202-966-5557
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Address: 4301 Connecticut Avenue NW - Suite 404
Washington, DC 20008
Phone: 202-966-5557
Fax: 202-966-8553
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
URL: http://www.geneticalliance.org/
Services Provided: A partnership of self-help groups and professionals, Genetic Alliance has developed a series of programs designed to increase the visibility of genetics and advocacy, establish strong networks and advance important campaigns, including community-based family history. Current programs include: Advocacy ATLAS, Community Centered Family Health History, Consumer Focused Newborn Screening, and Access to Credible Genetics Resources Network
Original Source:
Last Updated: 12/18/2017
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Gigi's Playhouse, Down Syndrome Achievement Centers
2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Organization Name: Down Syndrome Achievement Centers
Address: 2350 West Higgins Road
Hoffman Estates, IL 60169
Phone: 847-885-6147
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Email: info@gigisplayhouse.org
URL: https://gigisplayhouse.org/
Eligibility: Individuals with Down syndrome, their families and the community
Services Provided: Programs at GiGi’s Playhouse offer foundational learning opportunities for individuals with Down syndrome. Goals for each GiGi’s Playhouse program:

Create opportunities for parent networking and provide educational tools.
Instill high expectations for each participant to follow program routines and to fully participate in planned activities.
Motivate the child, parent and volunteers to give their “Best of All” in each program session.
Deliver purposeful programming tailored for individuals with Down syndrome, to include structured routines, purposeful activity planning and an (engaging/fun/creative) environment for to foster development and encourage growth in individuals with Down syndrome.
Provide specific, therapeutic or educational learning opportunities to support development of speech-language, social, and motor skills tailored to addressing the universal challenges of individuals with Down syndrome.
Remove the barrier of cost for our participants by offering free programs​.
Original Source:
Last Updated: 2/21/2018
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Immune Deficiency Foundation
110 West Road
Towson, MD 21204
Phone: 800-296-4433
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Address: 110 West Road
Towson, MD 21204
Phone: 800-296-4433
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
URL: http://www.primaryimmune.org
Eligibility: Individuals with primary immunodeficiency diseases and their families
Services Provided: The Immune Deficiency Foundation is the national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research.
Original Source:
Last Updated: 3/7/2018
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International Rett Syndrome Foundation
4600 Devitt Drive
Cincinnati, OH 45246
Phone: 800-818-7388
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Address: 4600 Devitt Drive
Cincinnati, OH 45246
Phone: 800-818-7388
Toll Free Phone: 800-818-7388
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Email: admin@rettsyndrome.org
URL: http://www.Rettsyndrome.org
Services Provided: An organization comprised of parents and friends of those diagnosed with Rett syndrome and is dedicated to providing you with the latest medical information, aggressively funding the most promising research, offering meaningful support, raising public awareness and advocating for all living with Rett syndrome. Lists resources and clinics by state, national resources, clinical trials.
Original Source:
Last Updated: 12/18/2017
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Laurent Clerc National Deaf Education Center
KDES PAS-6, 800 Florida Ave, NE
Washington, DC 20002-3695
Phone: 202-651-5051
Service Categories:
Disability/Diagnosis-Specific Advocacy
Information & Referral / Hotlines
Internet Information Resources
Address: KDES PAS-6, 800 Florida Ave, NE
Washington, DC 20002-3695
Phone: 202-651-5051
TDD: 202-651-5052
Fax: 202-651-5054
Service Categories:
Disability/Diagnosis-Specific Advocacy
Information & Referral / Hotlines
Internet Information Resources
URL: http://clerccenter.gallaudet.edu/
Services Provided: Responds to inquiries about a diverse range of topics related to deaf and hard-of-hearing children from infancy to age 21. Located at Gallaudet University.
Original Source:
Last Updated: 2/21/2018
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Lucile Packard Foundation for Children's Health
400 Hamilton Ave. Suite 340
Palo Alto, CA 94301
Phone: 650-497-8365
Service Categories:
CSHCN Administration & Programs
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
Address: 400 Hamilton Ave. Suite 340
Palo Alto, CA 94301
Phone: 650-497-8365
Service Categories:
CSHCN Administration & Programs
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
URL: http://www.lpfch.org/
Services Provided: Dedicated exclusively to the promotion and protection of children's health through fundraising, grantmaking and providing an informed perspective. Packard Children’s Hospital and Stanford School of Medicine supports clinical care, research, and education to improve the health of children and expectant mothers, locally and worldwide. Programs include Improving Systems of Care for Children with Special Health Care Needs and Elevating the Societal Priority of Children, providing wide-ranging, up-to-date data and research by tracking the status of California's children over time through its website, www.kidsdata.org.
Original Source:
Last Updated: 2/21/2018
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Muscular Dystrophy Association (MDA) USA
3300 E. Sunrise Drive
Tucson, AZ 85718
Phone: 800-572-1717
Service Categories:
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
Address: 3300 E. Sunrise Drive
Tucson, AZ 85718
Phone: 800-572-1717
Service Categories:
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
URL: http://www.mdausa.org
Services Provided: Support services, resources, transitional services, information resources for all aspects of living with muscular dystrophy with local services locator.
Original Source:
Last Updated: 2/21/2018
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National Association of Anorexia Nervosa and Associated Disorders
220 N Green Street
Chicago, IL 60607
Phone: 630-557-1330
Service Categories:
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
National Support Services, Disab/Diag
Address: 220 N Green Street
Chicago, IL 60607
Phone: 630-557-1330
Service Categories:
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
National Support Services, Disab/Diag
URL: http://www.anad.org
Eligibility: None
Services Provided: Provides online research, educational forums, support groups, professional resources and current information on treatment and prevention of eating disorders. Services include ANAD recovery mentorship, ANAD support groups, ANAD annual conference, and ANAD YouTube recovery channel.
Original Source:
Last Updated: 4/25/2018
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National Association of the Deaf
8630 Fenton St, Suite 820
Silver Spring, MD 20910-3819
Phone: 301-587-1788
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Educational Advocacy
Speech - Language Pathologists
Address: 8630 Fenton St, Suite 820
Silver Spring, MD 20910-3819
Phone: 301-587-1788
TDD: 301-587-1789
Fax: 301-587-1791
Service Categories:
Disability/Diagnosis-Specific Advocacy
Education About Disabilities/Diagnoses
Educational Advocacy
Speech - Language Pathologists
URL: http://www.nad.org
Eligibility: Contact for specific information.
Services Provided: The National Association of the Deaf (NAD), founded in 1880, safeguards the civil rights of deaf and hard of hearing Americans. As a national federation of state associations, individual members, and organizational and corporate affiliates, the advocacy work of the NAD encompasses a broad spectrum of areas including, but not limited to, accessibility, education, employment, healthcare, mental health, rehabilitation, technology, telecommunications, and transportation. The NAD website (http://www.nad.org) has a wealth of advocacy information and resources.
Original Source:
Last Updated: 2/21/2018
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National Brain Tumor Society
55 Chapel Street, Ste 200
Newton, MA 02458
Phone: 617-924-9997
Service Categories:
Disability/Diagnosis-Specific Advocacy
Address: 55 Chapel Street, Ste 200
Newton, MA 02458
Phone: 617-924-9997
Fax: 617-924-9998
Service Categories:
Disability/Diagnosis-Specific Advocacy
URL: http://www.braintumor.org
Eligibility: Anyone interested in brain tumor research, treatment or funding opportunities.
Services Provided: Finding better treatments, and ultimately a cure, for people living with a brain tumor today and anyone who will be diagnosed tomorrow.
Original Source:
Last Updated: 4/5/2018
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National Kidney Foundation
30 East 33rd Street
New York, NY 10016
Phone: 800-622-9010
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Address: 30 East 33rd Street
New York, NY 10016
Phone: 800-622-9010
Toll Free Phone: 800-622-9010
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
URL: https://www.kidney.org/
Services Provided: The National Kidney Foundation is the leading organization in the U.S. dedicated to the awareness, prevention and treatment of kidney disease.
Original Source:
Last Updated: 12/18/2017
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National Mental Health Information Center, Substance Abuse and Mental Health Services Administration (SAMHSA)
1 Choke Cherry Road
Rockville, MD 20857
Phone: 800-662-4357
Service Categories:
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
National Support Services, Addiction
Organization Name: Substance Abuse and Mental Health Services Administration (SAMHSA)
Address: 1 Choke Cherry Road
Rockville, MD 20857
Phone: 800-662-4357
Service Categories:
Disability/Diagnosis-Specific Advocacy
Internet Information Resources
National Support Services, Addiction
URL: https://findtreatment.samhsa.gov/locator?sType=mh
Eligibility: No eligibility requirements.
Services Provided: SAMHSA's National Mental Health Information Center was developed for users of mental health services and their families, the general public, policy makers, providers, and the media. The Center for Mental Health Services, within SAMHSA, leads Federal efforts to improve prevention and mental health treatment services for all Americans.
Information Center staff members are skilled at listening and responding to questions from the public and professionals. The staff quickly directs callers to Federal, State, and local organizations dedicated to treating and preventing mental illness. The Information Center also has extensive online and print publications, and information on Federal grants, conferences, and other events.
Provider Profiles: Use the locator website to filter your search: adolescent, substance, payment/insurance accepted, emergency, etc.

National
Original Source:
Last Updated: 12/18/2017
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Needs Beyond Medicine
PO Box 521618
Salt Lake City, UT 84152
Phone: 385-645-4626
Service Categories:
Disability/Diagnosis-Specific Advocacy
Medical Care Expense Assistance
Address: PO Box 521618
Salt Lake City, UT 84152
Phone: 385-645-4626
Service Categories:
Disability/Diagnosis-Specific Advocacy
Medical Care Expense Assistance
URL: http://www.needsbeyondmedicine.org/
Eligibility: Cancer patients
Services Provided: Provides financial assistance grants and online educational materials / workshops for cancer patients. Financial assistance is for non-medical expenses, such as, transportation, rent and other living costs. Does not provide medical advice, diagnosis or treatment.
Original Source:
Last Updated: 4/4/2018
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PACER Center: Parents Helping Parents
8161 Normandale Blvd.
Bloomington, MN 55437
Phone: 952-838-9000
Service Categories:
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Family Support Centers/Outreach
National Support Services, Disab/Diag
Address: 8161 Normandale Blvd.
Bloomington, MN 55437
Phone: 952-838-9000
Toll Free Phone: 800-537-2237
Service Categories:
Assistive Technology Equipment
Disability/Diagnosis-Specific Advocacy
Family Support Centers/Outreach
National Support Services, Disab/Diag
URL: http://www.pacer.org
Services Provided: Champions for children with disabilities, Parent Advocacy Coalition for Educational Rights, PACER Center expands opportunities and enhances the quality of life of children and young adults with disabilities and their families. PACER is staffed primarily by parents of children with disabilities and works in coalition with 18 disability organizations. Categories/programs include: Parent Information Center, National Bullying Prevention Center, Health Information Center, Simon Technology Center, National Parent Center Network, Early Childhood Family Information
Original Source:
Last Updated: 12/18/2017
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Pancreatic Cancer Action Network
1500 Rosecrans Avenue, Suite 200
Manhattan Beach, CA 90266
Phone: 310-725-0025
Service Categories:
Clinical Trials Research
Disability/Diagnosis-Specific Advocacy
Address: 1500 Rosecrans Avenue, Suite 200
Manhattan Beach, CA 90266
Phone: 310-725-0025
Toll Free Phone: 877-573-9971
Fax: 310-725-0029
Service Categories:
Clinical Trials Research
Disability/Diagnosis-Specific Advocacy
URL: http://www.pancan.org
Eligibility: Cancer patients, survivors, and their families
Services Provided: Provides research, patient support, community outreach and government advocacy. Raises money for direct private funding of research. Supports individuals and communities all across the country in working together to raise awareness and funds to develop more effective treatment options for better patient outcomes. We create a sense of hope and community so no one has to face pancreatic cancer alone.
Original Source:
Last Updated: 3/28/2018
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The Arc of the United States: for People with Intellectual and Developmental Disabilities
1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
Address: 1825 K Street NW, Suite 1200
Washington, DC 20006
Phone: 301-565-3842
Toll Free Phone: 800-433-5255
Fax: 301-565-3843
Service Categories:
Disability/Diagnosis-Specific Advocacy
National Support Services, Disab/Diag
URL: http://www.thearc.org/
Eligibility: developmental disabilities
Services Provided: A national organization of and for people with developmental disabilities and their families. Site provides information about public policy; information about insurance products; publications; discussion groups; employment registry; and links to local chapters and related organizations.
Original Source:
Last Updated: 12/18/2017
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