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.
Statewide Provider
120 North Main Street, Suite 202
Attleboro, MA 02703
Phone: 508-699-4035
Statewide Provider
Address:
120 North Main Street, Suite 202
Attleboro, MA 02703
Phone: 508-699-4035
Email: info@rarenewengland.org
Services Provided:

Rare Connections Support groups link

 Virtual Patient & Caregiver Support Groups to provide opportunities for adult patients and for caregivers to come together and share their experiences with others facing similar challenges. 

Provider Profiles:

Rare New England's mission is to bring together New England patients, families and providers touched by rare and complex disorders. We offer educational opportunities, create awareness of available resources,
and build foundations for support to improve patient quality of life. 

Source: Rhode Island Suggest Provider Queue
Last Updated: 7/6/2022
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
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
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
Email: cclvipresident@cclvi.org
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
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
Email: susanburns@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
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
Email: info@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