Education About Disabilities/Diagnoses

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Description: Programs that offer workshops, discussion groups, activities and other types of training that sensitize participants to people with disabilities, visible differences, and mental health and mental illness. Includes information for individuals and families with these conditions, as well as information to help others experience what it is like to have a disability, and share techniques for positive communication and interaction with people who have disabilities. (Adapted from AIRS PH-6200.1850 Disability Awareness Programs )

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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.

American Academy for Cerebral Palsy and Developmental Medicine

555 E. Wells Street, Ste 1100
Milwaukee, WI 53202
Phone: 414-918-3014

Service Categories:

www.aacpdm.org/index.php

Address: 555 E. Wells Street, Ste 1100
Milwaukee, WI 53202

Phone: 414-918-3014

Fax: 414-276-2146

Service Categories:

URL: http://www.aacpdm.org/index.php

Services Provided: A multidisciplinary scientific society devoted to the study of cerebral palsy and other childhood onset disabilities, to promoting professional education for the treatment and management of these conditions, and to improving the quality of life for people with these disabilities.

Original Source:	MedHome Portal
Last Updated:	3/22/2018

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4340 East-West Highway Suite 350
Bethesda, MD 20814
Phone: 301-657-0881

Service Categories:

www.autism-society.org/

Address: 4340 East-West Highway Suite 350
Bethesda, MD 20814

Phone: 301-657-0881

Toll Free Phone: 800-328-8476

Service Categories:

Email: info@autism-society.org

URL: https://www.autism-society.org/

Services Provided: We provide advocacy, education, information and referral, support, and community at national, state and local levels through our strong nationwide network of Affiliates.

Disability Awareness Programs
Specialized Information and Referral

Original Source:	Nationwide Suggest Providers Queue
Last Updated:	8/7/2019

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Beach Center on Disability, University of Kansas

Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600

Service Categories:

www.beachcenter.org/

Organization Name: University of Kansas

Address: Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534

Phone: 785-864-7600

Fax: 785-864-7605

Service Categories:

URL: http://www.beachcenter.org/

Services Provided: The Beach Center on Disability is a multidisciplinary research and training center committed to making a significant and sustainable positive difference in the quality of life of individuals and families affected by disability and the professionals who support them. Internationally-recognized leaders in research on and interventions to promote the self-determination of children, youth, and adults with (and without) disabilities.

Provider Profiles: Based at the University of Kansas.

Original Source:	MedHome Portal
Last Updated:	1/10/2019

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Depression and Bipolar Support Alliance

730 N Franklin St, Suite 501
Chicago, IL 60654-7225
Phone: 800-826-3632

Service Categories:

www.dbsalliance.org

Address: 730 N Franklin St, Suite 501
Chicago, IL 60654-7225

Phone: 800-826-3632

Service Categories:

URL: http://www.dbsalliance.org

Eligibility: Contact for specific information.

Services Provided: Educates patients, professionals, and the public concerning the nature of depressive, bipolar disorder (also known as manic depression) or mood disorder. Maintains over 1000 support groups around the country.

Provider Profiles: National

Original Source:	MedHome Portal
Last Updated:	12/18/2017

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Epilepsy Foundation of America

8301 Professional Place East Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700

Service Categories:

www.epilepsy.com/

Address: 8301 Professional Place East Ste 230
Landover, MD 20785-2356

Phone: 301-459-3700

Toll Free Phone: 800-332-1000

Fax: 301-577-2684

Service Categories:

Email: ContactUs@efa.org

URL: https://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. Learn about epilepsy, types of seizures, triggers, diagnosis, treatment, etc. Offers a seizure diary app self-management tool.

Provider Profiles: Spanish Speakers Phone number: 866-748-8008

Original Source:	Nationwide Suggest Providers Queue
Last Updated:	8/6/2019

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Frank Porter Graham Child Development Institute (FPG), University of North Carolina at Chapel Hill

CB 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622

Service Categories:

fpg.unc.edu/about-fpg

Organization Name: University of North Carolina at Chapel Hill

Address: CB 8180
Chapel Hill, NC 27599-8180

Phone: 919-966-2622

Service Categories:

URL: https://fpg.unc.edu/about-fpg

Services Provided: Enhances the lives of children and families through interdisciplinary research, technical assistance, professional development, and implementation science. FPG is one of the nation's oldest and largest multidisciplinary centers devoted to the study of young children and their families. About 275 researchers, implementation and technical assistance specialists, staff, and students work on more than 75 projects related to developmental disabilities; early care and education; physical and social health; professional development, technical assistance, and implementation science; public policy and evaluation; and racial, ethnic, linguistic, cultural, and socioeconomic diversity.

Original Source:	MedHome Portal
Last Updated:	1/10/2019

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Immune Deficiency Foundation

110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433

Service Categories:

www.primaryimmune.org

Address: 110 West Road Ste 300
Towson, MD 21204

Phone: 800-296-4433

Fax: 410-321-9165

Service Categories:

Email: frontdesk@primaryimmune.org

URL: http://www.primaryimmune.org

Eligibility: Individuals with primary immunodeficiency diseases and their families

Services Provided: A national patient organization dedicated to improving the diagnosis, treatment, and quality of life of persons with primary immunodeficiency diseases through advocacy, education, and research. Learn about primary immunodeficiencies, it's diagnosis, treatment; and living with PI, at different ages, getting support, finding a physician, insurance, school, etc.

IDF Physician Finder to locate a physician by location, last name, specialty and more.

Original Source:	MHP-Nationwide
Last Updated:	7/11/2019

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John Tracy Clinic for Young Children with Hearing Loss

806 West Adams Boulevard
Los Angeles, CA 90007
Phone: 213-748-5481

Service Categories:

www.jtc.org/

Address: 806 West Adams Boulevard
Los Angeles, CA 90007

Phone: 213-748-5481

Fax: 213-749-1651

Service Categories:

URL: https://www.jtc.org/

Eligibility: Infants and preschool children with hearing loss.

Services Provided: A leading diagnostic and education center for young children with hearing loss. It provides free, parent-centered services. The Clinic offers worldwide family services, local family services, professional education, preschool, and hearing testing. The Clinic has over 60 years of expertise in the spoken language option, called "oralism," serving 25,000 families each year.

Hearing Screening
Parent Support Groups
Preschools
Online courses

Original Source:	Nationwide Suggest Providers Queue
Last Updated:	8/7/2019

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Lupus Foundation of America

2121 K Street NW, Suite 200
Washington, DC 20037
Phone: 202-349-1155

Service Categories:

www.lupus.org/about-us

Address: 2121 K Street NW, Suite 200
Washington, DC 20037

Phone: 202-349-1155

Toll Free Phone: 800-558-0121

Fax: 202-349-1156

Service Categories:

Email: info@lupus.org

URL: https://www.lupus.org/about-us

Services Provided: Provides education and support services to people affected by lupus. We collaborate with experts to provide clear, easy-to-use information, programs and resources to help you navigate every step of your journey with lupus. An online community, an expert series, a resource database, a nurse and certified health educator call line.

Original Source:	MHP-Nationwide
Last Updated:	8/6/2019

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ME/CFS and Fibromyalgia Center of Excellence, Bateman Horne Center of Excellance

24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-328-8080

Service Categories:

batemanhornecenter.org/

Organization Name: Bateman Horne Center of Excellance

Address: 24 South 1100 East, Suite 205
Salt Lake City, UT 84102

Phone: 801-328-8080

Fax: 1-866-555-1122

Service Categories:

Email: support@batemanhornecenter.org

URL: http://batemanhornecenter.org/

Eligibility: None

Wheelchair Accessible: Complete

Services Provided: Leading the way in the medical advancement and treatment of Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) and Fibromyalgia. Formerly the Fatigue Consultation Clinic (FCC) and the Organization for Fatigue & Fibromyalgia Education & Research (OFFER), BHC been committed to the education of medical providers for more than 25 years.

Provider Profiles: Lucinda Bateman M.D.

Original Source:	Nationwide Suggest Providers Queue
Last Updated:	3/21/2019

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Multiple Sclerosis Associations of America

375 Kings Highway North
Cherry Hill, NJ 08034

Service Categories:

mymsaa.org/

Address: 375 Kings Highway North
Cherry Hill, NJ 08034

Toll Free Phone: 800-532-7667

Fax: 856-661-9797

Service Categories:

Email: MSquestions@mymsaa.org

URL: https://mymsaa.org/

Eligibility: Individuals with MS

Services Provided: Ongoing support and direct services.

Individual Advocacy
Information and Referral
Equipment Distribution Program by application

Original Source:	Nationwide Suggest Providers Queue
Last Updated:	8/8/2019

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Multiple Sclerosis Foundation (MSFOCUS)

6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132

Service Categories:

msfocus.org/

Address: 6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132

Toll Free Phone: 800-225-6495

Service Categories:

URL: https://msfocus.org/

Wheelchair Accessible: Ramps

Services Provided: Nonprofit organization, our primary mission is to ensure the best quality of life for those coping with MS by providing comprehensive support and educational programs.

Disease/Disability Information
Information Lines
Information and Referral
Medical Information Lines
Specialized Information and Referral

Original Source:	Nationwide Suggest Providers Queue
Last Updated:	8/7/2019

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National Cancer Institute

9609 Medical Center Drive
Bethesda, MD 20892-9760
Phone: 800-422-6237

Service Categories:

www.cancer.gov

Address: 9609 Medical Center Drive
Bethesda, MD 20892-9760

Phone: 800-422-6237

Fax: (719) 776-3132

Service Categories:

Email: cancergovstaff@mail.nih.gov

URL: http://www.cancer.gov

Eligibility: None

Wheelchair Accessible: Complete

Services Provided: A free public service of the National Cancer Institute providing the latest most accurate cancer information for patients, their families, the general public, and health professionals in a personalized confidential manner.

Original Source:	Nationwide Suggest Providers Queue
Last Updated:	7/2/2019

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National Institute of Diabetes and Digestive and Kidney Diseases

3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747

Service Categories:

www.niddk.nih.gov/

Address: 3 Information Way
Bethesda, MD 20892-3580

Phone: 800-860-8747

TDD: 866-569-1162

Service Categories:

Email: healthinfo@niddk.nih.gov

URL: https://www.niddk.nih.gov/

Eligibility: Contact for specific information.

Services Provided: NIDDK research creates knowledge about and treatments for diseases that are among the most chronic, costly, and consequential for patients, their families, and the Nation. Offers clinical trials, financial assistance for researchers, health information, and publications.

Original Source:	Nationwide Suggest Providers Queue
Last Updated:	7/30/2019

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National Institute on Deafness and Other Communication Disorders

31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044

Service Categories:

www.nidcd.nih.gov

Address: 31 Center Dr., MSC 2320
Bethesda, MD 20892

Phone: 800-241-1044

TDD: 800-241-1055

Service Categories:

URL: http://www.nidcd.nih.gov

Eligibility: communication disorders

Services Provided: Information specialists provide callers with fact sheets, resources and referrals to other organizations and agencies. Topics include hearing, balance, smell and taste, voice, speech, and language disorders.

Original Source:	MedHome Portal
Last Updated:	7/23/2019

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National Organization for Rare Disorders (NORD)

55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100

Service Categories:

www.rarediseases.org/

Address: 55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810

Phone: 203-744-0100

Toll Free Phone: 800-634-7207

Fax: 203-263-9938

Service Categories:

URL: https://www.rarediseases.org/

Eligibility: Persons with a rare disease.

Services Provided: NORD is a unique federation of voluntary health organizations dedicated to helping people with rare "orphan" diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service. Co-pay Assistance Program.
Patient Assistance Program, RareCare: helps patients obtain life-saving or life-sustaining medication they could not otherwise afford. These programs provide medication, financial assistance with insurance premiums and co-pays, diagnostic testing assistance, and travel assistance for clinical trials or consultation with disease specialists.

Original Source:	MedHome Portal
Last Updated:	8/6/2019

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Parent Project Muscular Dystrophy

401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Phone: 201-250-8440

Service Categories:

www.parentprojectmd.org/

Address: 401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601

Phone: 201-250-8440

Toll Free Phone: 800-714-5437

Fax: 201-250-8435

Service Categories:

Email: info@parentprojectmd.org

URL: https://www.parentprojectmd.org/

Services Provided: Information about Duchenne Muscular Dystrophy for families, including responding to a new diagnosis, finding care, and genetic testing. PPMD’s Decode Duchenne genetic testing program provides free genetic testing and counseling to people in the Duchenne or Becker muscular dystrophy community who otherwise could not afford genetic testing.

Runs Certified Duchenne Care Center Program, which supports standardized comprehensive care for people with Duchenne. Also promotes research and organizes advocacy initiatives.

Original Source:	MHP-Nationwide
Last Updated:	5/9/2019

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Patient Services Inc (PSI)

PO Box 5930
Midlothian, VA 23112
Phone: 800-366-7741

Service Categories:

www.patientservicesinc.org/

Address: PO Box 5930
Midlothian, VA 23112

Phone: 800-366-7741

Toll Free Phone: 800-366-7741

Fax: 804-744-9388

Service Categories:

Email: psiops@uneedpsi.org

URL: https://www.patientservicesinc.org/

Eligibility: Financial assistance for insured and uninsured patients with chronic illnesses. Assistance is focused on a limited number of around 20 diseases, and the list always changes.

Services Provided: Provides online disease and treatment information as well as limited financial assistance for patients with chronic illnesses who are struggling to keep up with expensive premiums and copayments. Available programs and specific illnesses are regularly updated. Financial assistance includes: subsidizing the cost of health insurance premiums; providing pharmacy and treatment copayment assistance; assisting with Medicare Part D co-insurance; providing travel assistance for transportation reimbursement.

Provider Profiles: Online resources

Original Source:	MHP-Nationwide
Last Updated:	7/11/2019

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Tourette Association of America

42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999

Service Categories:

www.tourette.org/

Address: 42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820

Phone: 718-224-2999

Toll Free Phone: 888-486-8738

Fax: 718-279-9596

Service Categories:

Email: support@tourette.org

URL: http://www.tourette.org/

Services Provided: A national organization serving children, individuals and families affected by Tourette Syndrome (TS.) Comprehensive online information includes six online CME/CNE programs, programs on Recognition, Diagnosis & Treatment, and training for Allied Professionals and Educators. The website also contains resources for patients and families.

Original Source:	MedHome Portal
Last Updated:	8/6/2019

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