Advocacy
The Juvenile Scleroderma Network is an organization dedicated to provide emotional support and educational information to parents and their children living with juvenile scleroderma, to support pediatric research to identify the cause of and the cure for juvenile sscleroderma, and to enhance public awareness.
In the US, the Scleroderma Research Foundation is dedicated to raise awareness of the disease and assist those who are affected. The Scleroderma Research Foundation sponsors research into the condition. Comedian and television presenter Bob Saget, a board member of the SRF, directed the 1996 ABC TV movie For Hope, starring Dana Delany, which depicts a young woman fatally affected by scleroderma; the film was based on the experiences of Saget's sister Gay.
Read more about this topic: Systemic Scleroderma