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Education About Disabilities/Diagnoses

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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:
Education About Disabilities/Diagnoses
Address: 555 E. Wells Street, Ste 1100
Milwaukee, WI 53202
Phone: 414-918-3014
Service Categories:
Education About Disabilities/Diagnoses
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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Autism Society
4340 East-West Highway Suite 350
Bethesda, MD 20814
 Phone: 301-657-0881
Service Categories:
Education About Disabilities/Diagnoses
Address: 4340 East-West Highway Suite 350
Bethesda, MD 20814
Phone: 301-657-0881
Toll Free Phone: 800-328-8476
Service Categories:
Education About Disabilities/Diagnoses
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:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Organization Name: University of Kansas
(Show others in Organization)
Address: Haworth Hall, Room 313
1200 Sunnyside Avenue
Lawrence, KS 66045-7534
Phone: 785-864-7600
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
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:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Address: 730 N Franklin St, Suite 501
Chicago, IL 60654-7225
Phone: 800-826-3632
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
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:
Disability Awareness Programs
Education About Disabilities/Diagnoses
Specialized Information Resources
Address: 8301 Professional Place East Ste 230
Landover, MD 20785-2356
Phone: 301-459-3700
Toll Free Phone: 800-332-1000
Service Categories:
Disability Awareness Programs
Education About Disabilities/Diagnoses
Specialized Information Resources
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:
Education About Disabilities/Diagnoses
Organization Name: University of North Carolina at Chapel Hill
(Show others in Organization)
Address: CB 8180
Chapel Hill, NC 27599-8180
Phone: 919-966-2622
Service Categories:
Education About Disabilities/Diagnoses
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:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
Address: 110 West Road Ste 300
Towson, MD 21204
Phone: 800-296-4433
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
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:
Education About Disabilities/Diagnoses
Address: 806 West Adams Boulevard
Los Angeles, CA 90007
Phone: 213-748-5481
Service Categories:
Education About Disabilities/Diagnoses
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:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
Address: 2121 K Street NW, Suite 200
Washington, DC 20037
Phone: 202-349-1155
Toll Free Phone: 800-558-0121
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Specialized Information Resources
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:
Continuing Medical Education
Disability Awareness Programs
Education About Disabilities/Diagnoses
Organization Name: Bateman Horne Center of Excellance
(Show others in Organization)
Address: 24 South 1100 East, Suite 205
Salt Lake City, UT 84102
Phone: 801-328-8080
Service Categories:
Continuing Medical Education
Disability Awareness Programs
Education About Disabilities/Diagnoses
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:
Education About Disabilities/Diagnoses
Financial Assistance, Other
National Support Services, Disab/Diag
Address: 375 Kings Highway North
Cherry Hill, NJ 08034
Toll Free Phone: 800-532-7667
Service Categories:
Education About Disabilities/Diagnoses
Financial Assistance, Other
National Support Services, Disab/Diag
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:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Address: 6520 North Andrews Avenue
Fort Lauderdale, FL 33309-2132
Toll Free Phone: 800-225-6495
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
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 and Referral
Specialized Information and Referral
Original Source: Nationwide Suggest Providers Queue
Last Updated: 11/25/2019
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National Cancer Institute
9609 Medical Center Drive
Bethesda, MD 20892-9760
 Phone: 800-422-6237
Service Categories:
Education About Disabilities/Diagnoses
Specialized Information Resources
Address: 9609 Medical Center Drive
Bethesda, MD 20892-9760
Phone: 800-422-6237
Service Categories:
Education About Disabilities/Diagnoses
Specialized Information Resources
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:
Clinical Trials Research
Education About Disabilities/Diagnoses
Specialized Information Resources
Address: 3 Information Way
Bethesda, MD 20892-3580
Phone: 800-860-8747
TDD: 866-569-1162
Service Categories:
Clinical Trials Research
Education About Disabilities/Diagnoses
Specialized Information Resources
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:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Speech - Language Pathologists
Address: 31 Center Dr., MSC 2320
Bethesda, MD 20892
Phone: 800-241-1044
TDD: 800-241-1055
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Speech - Language Pathologists
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:
Education About Disabilities/Diagnoses
Medical Care Expense Assistance
National Support Services, Disab/Diag
Prescription Drug Patient Assistance Programs
Transportation Expense Assistance
Address: 55 Kenosia Avenue
PO Box 1968
Danbury, CT 06810
Phone: 203-744-0100
Toll Free Phone: 800-999-6673
Service Categories:
Education About Disabilities/Diagnoses
Medical Care Expense Assistance
National Support Services, Disab/Diag
Prescription Drug Patient Assistance Programs
Transportation Expense Assistance
URL: https://www.rarediseases.org/
Languages Spoken: Spanish
Eligibility: Persons with a rare disease, financial need.
Services Provided: A patient advocacy organization for individuals with rare diseases and the organizations that serve them. NORD provides Patient Assistance Programs that provide financial assistance. In addition, NORD provides links to other financial assistance resources.
Patient Assistance Program, RareCare, provides 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: MHP-Nationwide
Last Updated: 9/12/2019
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Parent Project Muscular Dystrophy
401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
 Phone: 201-250-8440
Service Categories:
Education About Disabilities/Diagnoses
Genetics Laboratories
Medical Care Expense Assistance
Address: 401 Hackensack Avenue, 9th Floor
Hackensack, NJ 07601
Phone: 201-250-8440
Toll Free Phone: 800-714-5437
Service Categories:
Education About Disabilities/Diagnoses
Genetics Laboratories
Medical Care Expense Assistance
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:
Education About Disabilities/Diagnoses
Medical Care Expense Assistance
Prescription Drug Patient Assistance Programs
Specialized Information Resources
Transportation Expense Assistance
Address: PO Box 5930
Midlothian, VA 23112
Phone: 800-366-7741
Toll Free Phone: 800-366-7741
Service Categories:
Education About Disabilities/Diagnoses
Medical Care Expense Assistance
Prescription Drug Patient Assistance Programs
Specialized Information Resources
Transportation Expense Assistance
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:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Tourette Syndrome Programs
Address: 42-40 Bell Blvd Suite 205
Bayside, NY 11361-2820
Phone: 718-224-2999
Toll Free Phone: 888-486-8738
Service Categories:
Education About Disabilities/Diagnoses
National Support Services, Disab/Diag
Tourette Syndrome Programs
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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