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Health Related Advocacy

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Organizations that are dedicated to protecting and improving the quality and affordability of health care for all individuals and advocating for changes that will achieve these goals. (AIRS TD-1600.2570 Health Related Advocacy Groups) Includes voluntary organizations committed to empowering and enhancing the lives of individuals with disability/diagnosis-specific conditions and their families through support and public awareness.

Service Legend
Local Service
Statewide Service: Provides online resources, telehealth, or service at a satellite office.
Nationwide Service: Provides online resources, telehealth or services at a regional/national headquarters location.
American Diabetes Association View on Map
Nationwide Provider
2451 Crystal Drive, Suite 900
Arlington, VA 22202
Nationwide Provider
Address:
2451 Crystal Drive, Suite 900
Arlington, VA 22202
Toll Free Phone: 800-342-2383
Service Categories:
Camps for Children with Special Needs
Health Related Advocacy
Specialized Information Sources
URL: https://www.diabetes.org/
Services Provided:

Provides objective and credible information, advocacy and research for diabetes. Website offers education, legal rights, health insurance, tips for caregivers, etc. Provides camps for children with Type I diabetes and with or at risk of developing Type II diabetes.
Source: MHP-Nationwide
Last Updated: 5/9/2022
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The Council of Citizens with Low Vision International View on Map
Nationwide Provider
3817 Tuesday Way
Louisville, KY 40219
 Phone: 502-905-0869
Nationwide Provider
Address:
3817 Tuesday Way
Louisville, KY 40219
Phone: 502-905-0869
Toll Free Phone: 800-733-2258
Service Categories:
Community Based Organizations
Health Related Advocacy
Email: cclvipresident@cclvi.org
URL: https://cclvi.info/
Services Provided:

Provide support, resources, education, and advocacy for those who are impacted by low vision and visual impairment.
Source: Nationwide Suggest Providers Queue
Last Updated: 5/7/2022
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United Ostomy Associations of America View on Map
Nationwide Provider
P.O. Box 525
Kennebunk, ME 04043
Nationwide Provider
Address:
P.O. Box 525
Kennebunk, ME 04043
Toll Free Phone: 800-826-0826
Service Categories:
Health Related Advocacy
National Support Services, Disab/Diag
Email: susanburns@ostomy.org
URL: https://www.ostomy.org/
Services Provided:

Promotes quality of life for people with ostomies and continent diversions through information, support, advocacy, and collaboration. Hosts a national network for bowel and urinary diversion support groups in the United States. 
Source: Nationwide Suggest Providers Queue
Last Updated: 5/7/2022
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Mended Little Hearts View on Map
Nationwide Provider
1500 Dawson Road
Merry Acres Executive Building
Albany, GA 31707
 Phone: 229-518-2680
Nationwide Provider
Address:
1500 Dawson Road
Merry Acres Executive Building
Albany, GA 31707
Phone: 229-518-2680
Toll Free Phone: 888-432-7899
Fax: 229-518-3879
Service Categories:
Health Related Advocacy
National Support Services, Disab/Diag
Specialized Information Sources
Email: info@mendedhearts.org
URL: https://mendedhearts.org/
Eligibility:

Patients and families of children with congenital heart disease.
Services Provided:

Provides ongoing peer-to-peer support, education, and advocacy to heart patients and their families. Local chapter locator available on website.

Services Include:

  • peer support and education
  • education resources
  • hospital outreach
  • CHD awareness
  • community health education
  • online community
  • advocacy
Source: Nationwide Suggest Providers Queue
Last Updated: 5/7/2022
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National Council on Severe Autism View on Map
Nationwide Provider
PO Box 26853
San Jose, CA 95159-6853
Nationwide Provider
Address:
PO Box 26853
San Jose, CA 95159-6853
Service Categories:
Health Related Advocacy
Email: info@ncsautism.org
URL: https://www.ncsautism.org/
Services Provided:

Pursuing recognition, policy and solutions for the surging population of individuals, families and caregivers affected by severe forms of autism and related disorders.

Services Include:

  • Education to the public
  • Platform for policy discourse and services
  • Education for policy makers
  • Promote research
  • Promote awareness and acceptance
Source: MHP-Nationwide
Last Updated: 3/2/2023
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The Marfan Foundation View on Map
Nationwide Provider
22 Manhasset Avenue
Port Washington, NY 11050
 Phone: 516-883-8712
Nationwide Provider
Address:
22 Manhasset Avenue
Port Washington, NY 11050
Phone: 516-883-8712
Toll Free Phone: 800-862-7326
Fax: 516-883-8040
Service Categories:
Health Related Advocacy
National Support Services, Disab/Diag
URL: https://www.marfan.org/
Services Provided:

Provides support for individuals with genetic aortic and vascular conditions, including Marfan, Loeys-Dietz, and Vascular Ehlers-Danlos syndromes.
Source: Nationwide Suggest Providers Queue
Last Updated: 3/2/2023
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