The Scleroderma Foundation: The National Resource for People with Scleroderma
The Scleroderma Foundation is the national organization for people with scleroderma and their families and friends. It was formed January 1, 1998, by a merger between the West Coast-based United Scleroderma Foundation and the East Coast-based Scleroderma Federation. The national office is headquartered in Danvers, Mass.
Our Three-Fold Mission of Support, Education and Research
The Scleroderma Foundation offers the following tools and resources in support of people livingwith scleroderma and their families:
- Has a nationwide network of 23 chapters and more than 150 support groups
- Staff a toll-free helpline providing information and referrals to callers
- Publish a quarterly magazine called "Scleroderma Voice"
- Offer a variety of brochures, booklets and newsletters, along with our informative website
Additionally, the Foundation hosts an annual National Patient Education Conference. The conference offers various educational and networking opportunities for people living with scleroderma, their caregivers, family members and friends. Workshops, panel discussions and other educational sessions are led by the leading scleroderma researchers and healthcare professionals.
As part of our education mission, we not only perform all the functions mentioned above, we also work with our Medical Advisory Board of internationally known scleroderma experts.
Currently, we budget an average of $1 million per year for research funding, our single largest budgeted expense. The Scleroderma Foundation takes its fiduciary responsibility to donors very seriously, especially with regard to our research grant program.
In the case of research funds, the Foundation's Peer Research Review Committee, composed of medical experts on scleroderma from around the world, helps determine which proposals will be funded by reading, analyzing and ranking all proposals received.
You can contact the Scleroderma Foundation from 8:30 a.m. to 5 p.m. (Eastern) Monday through Friday. Our toll-free number is (800) 722-HOPE (4673). If you call outside of those hours, please leave us a message.
To contact a local chapter or support group in your area, please click here.
Annual ReportIRS Form 990