“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-Video- Institute for Child Health Policy at the University of Florida, Health Care Transition Initiative

Advocacy Tip Sheet- Kids as Self Advocates (KASA)

Two friends, Rebecca and Lilly. Rebecca, age 5, on the left has Down syndrome and Lilly, age 4, on the right has Praeder Willy syndrome.

Civil Rights and Advocacy Resources- Kids as Self Advocates (KASA)

Secondary Transition Toolkit- Pennsylvania Youth Leadership Network

Secondary Health Care Transition Toolkit- Pennsylvania Youth Leadership Network

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