National Scleroderma Foundation

The mission of the National Scleroderma Foundation is to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families and support network. Our vision is to be a relentless force in finding a cure and improving care for people with scleroderma.

As a rare disease, scleroderma is relatively unknown and is frequently not diagnosed upon first consultation with a healthcare professional. Further, the disease presents differently in patients. Our intention is to be the primary source of information, treatment options and medical resources. Our goal is to fund the research which will find effective new treatments and ultimately, the cure. At the present time, there is no known cause or cure for scleroderma.

Research is critical for determining the cause and cure of scleroderma. The Scleroderma Foundation annually funds more than a million dollars in grants to talented researchers across the country. The grants are reviewed by the Foundation's Peer Review Committee which utilizes the rigorous National Institute of Health scoring system. The grant recipients' work is critical in achieving the ultimate goal of finding the cure.

Support and education are provided to the scleroderma community in a variety of ways. Newly diagnosed patients reach out to the Foundation daily to request informational materials. During the past year, we provided 7,191 information packets to patients across the country. There are more than 3,000 discussion threads on the Inspire web community. We publish a quarterly magazine with the latest updates on treatments, clinical trials and research updates.

Annually, we host a National Scleroderma Conference which is attended by more than 600 people. It brings medical specialists, patients and their care givers together to learn more about scleroderma. This Conference is a highly successful strategy to inform and support our patients.

The National Scleroderma Foundation is led effectively by a CEO who is well versed and tenured in the field. The Foundation employs a team of talented professional staff who bring a variety of experience and expertise to create a highly effective team.

The Foundation has 13 chapters and 100+ support groups across the country who are committed to serving the scleroderma community by hosting local patient education seminars and fundraising events.

In addition to an active and engaged Board of Directors, the Foundation has a Medical and Scientific Advisory Board, made up of medical professionals whose primary area of expertise is scleroderma. They are recognized authorities and leading experts in the field, and provide guidance and counsel to the Foundation in its work. The Foundation also benefits from the expertise of a Patient Advisory Board.

Our 13 chapters and 100+ support groups are expanding our national support and education efforts. Weekly, we send out an e-letter with the latest news to over 20,000 people. Quarterly, we publish a magazine with the latest news on research and breakthroughs to 1,000 individuals.

We are active patient advocates and annually bring a significant contingent to Capitol Hill to speak with our legislators about the critical importance of federal funding for research.

We have grown attendance at our National Scleroderma Conference every year. Our attendees has increased from 548 in 2013 to 600+ in 2023.

We have implemented sound business practices and expense control to insure that the maximum amount of funds raised is devoted to the scleroderma community. The Foundation invests 80% of total expenses to programs and services.