About the Foundation

No matter where you or your child are in their scleroderma journey, the National Scleroderma Foundation is here to help you find your best path forward.

About Us

Mission, Vision, Values

Our mission, vision, and values reflect the shared experience of the scleroderma community, united in their determination to overcome scleroderma forever.

Accountability

Transparency & Reporting

Accountability is essential to the success of our shared mission. Our volunteer Board of Directors exercises their fiduciary responsibility, and we fully support the evaluation of charities by outside organizations.

LEADERSHIP

Our Team

Effective leadership is essential for any organization to succeed.  The National Scleroderma Foundation enjoys a dedicated, volunteer Board of Directors that exercises its fiduciary responsibilities, an extraordinary, volunteer Medical & Scientific Advisory Board comprised of world-renowned physicians and scientists, and an examplary professional staff committed to advancing our mission.

The National Scleroderma Foundation is a 501(c)(3) charitable organization founded in 1998 to advance medical research, promote disease awareess, and provide support and education to people with scleroderma. Supported by a network of thousands of individuals across the United States, the Foundation helps those living with scleroderma by providing support and education at the same time that it funds research to discover the cause, to understand the mechanism, and together, to overcome this disease forever.

One of the most challenging things about scleroderma is that it shows up differently in each person. It’s more complicated to manage since there is not one clear path. At the National Scleroderma Foundation, we know that no two journeys are the same. We help people find the resources that are right for them so they can live better with scleroderma.

Learn about scleroderma, the facts, the latest research, and treatments through our comprehensive online information center, local chapters and our National Scleroderma Conference.

Locate a Designated Scleroderma Research & Treatment Center, specialists, clinical trials, studies, and get help navigating the healthcare system.

Share and learn from others, at different places in their journey, through Scleroderma Support Groups for adults, children, and those who care for them.

Work to improve local access to care by better educating the medical community about this rare disease

Grow the community of people who care about fighting for those with scleroderma by giving them ways to help

Accelerate the search for better treatments, and ultimately, a cure by driving research funding and advocacy.

 

Thank you for joining us on our journey to be a relentless force in finding a cure.