About Us

About Us

The Scleroderma Foundation: The National Resource for People with Scleroderma

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The Scleroderma Foundation is a qualified national nonprofit operating under 501(c)(3) status. The foundation’s federal tax identification number is 52-1375827. Our mission is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support networks. The foundation has 19 active chapters and 160 support groups across the country.

  • Support: To help individuals and families cope with scleroderma through mutual support programs, peer counseling, physician referrals, and educational information.
  • Education: To promote public awareness and education for individuals affected by scleroderma and health professional through seminars, literature, and publicity.
  • Research: To stimulate and support research to improve treatment and ultimately find the cause of and cure for scleroderma and related diseases.
 

Support

The Scleroderma Foundation offers the following tools and resources in support of people living with scleroderma and their families:

  • Has a nationwide network of 19 active chapters and more than 160 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

If you recently were diagnosed with scleroderma, you may want to check out our free brochure downloads or visit our newly diagnosed section for more information.

Additionally, the Foundation hosts an annual National Scleroderma 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.

Education

As part of our education mission, we not only perform all the functions mentioned above, we also work with our Medical and Scientific Advisory Board of internationally known scleroderma experts.

Research

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.

Learn more about our research program >>

Contact Us

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.