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Access to Healthcare

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When we found out our son was going to have Cooley’s Anemia we started educating ourselves about that genetic disorder and the treatment he would require. I discovered there was going to be considerable health care cost and researched potential ways to address this issue. I decided I was going to try and improve the system (healthcare) not only for my son but for other families. Since that time (23 years ago), I have been involved advocating through a number of organizations and continue to write, call, and advocate for accessible, quality, and affordable healthcare.

-Story from a parent advocate


Talking With Your Doctor and Other Health Care Professionals-VideoInstitute for Child Health Policy at the University of Florida, Health Care Transition Initiative


Advocacy Tip SheetKids as Self Advocates (KASA)

Two girls standing in front of a brick wall.

Two friends share a moment. Rebecca (left), age 5, has Down syndrome, and Lilly, age 4, has Praeder Willy syndrome.

Civil Rights and Advocacy ResourcesKids as Self Advocates (KASA)

Secondary Transition ToolkitPennsylvania Youth Leadership Network

Secondary Health Care Transition ToolkitPennsylvania Youth Leadership Network

Being a Healthy Adult: How to Advocate for Your Health and Health CareKathy Roberson, M.S.W, The Boggs Center on Developmental Disabilities

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