About

About Scleroderma

Scleroderma is a chronic, often progressive, autoimmune disease in which the immune system attacks its own body.

Scleroderma means “hard skin.” It can cause a thickening and tightening of the skin. In some cases, it causes serious damage to internal organs including the lungs, heart, kidneys, esophagus and gastrointestinal tract. As scarring, or sclerosis, of these organs and organ systems progress, they work less effectively, and can lead to organ failure and death.

Some medications and treatments can help with certain symptoms, but there is no cure for scleroderma. The disease affects about 300,000 people across the U.S. In comparison, approximately the same number of people are affected by multiple sclerosis.

About Scleroderma Awareness Month

For more than 20 years, the Scleroderma Foundation, its Chapters and Support Groups have recognized June as Scleroderma Awareness Month, marking it with annual awareness and fundraising events, as well as obtaining presidential, state and local proclamations.  The Scleroderma Foundation has joined the Federation of European Scleroderma Associations (FESCA), and other international scleroderma organizations in recognizing June 29 as World Scleroderma Awareness Day.

About the Scleroderma Foundation

The Scleroderma Foundation is the national organization for people with scleroderma, their families and friends. It was formed Jan. 1, 1998, by a merger between the United Scleroderma Foundation and the Scleroderma Federation.

The Scleroderma Foundation is headquartered in the metro Boston area in Danvers, Mass. It is a 501(c)(3) non-profit organization dedicated to serving the interests of people living with scleroderma. The Foundation has a network of 24 chapters and 150 support groups committed to carrying out the three-fold mission of support, education and research. The Scleroderma Foundation funds an average of $1 million in new grants each year to find the cause and cure for scleroderma.

For more information about the Scleroderma Foundation, visit www.scleroderma.org or call (800) 722-HOPE (4673). You also can find the Foundation on Facebook (www.facebook.com/sclerodermaus) and Twitter (@scleroderma).

Frequently Asked Questions about Scleroderma – Get some answers to your burning questions.

Sample Letter to the Editor – Download a Word document to help you reach out to local media.

Talking points - Download a PDF of talking points so you can easily share scleroderma information with others, including members of the media, your family or friends!

Fast Facts

• 30 million Americans suffer from a rare disease
• According to the National Institutes of Health (NIH), there are almost 7,000 rare diseases
• Less than 12 percent of the American public can name a rare disease
• Approximately 300,000 Americans have scleroderma
• An estimated 80,000 to 100,000 people have systemic scleroderma
• Approximately three to four times more women develop scleroderma
• Scleroderma can affect every age group, but the onset is most frequent between 25 and 55
• 90 percent of people living with systemic scleroderma also have Raynaud Phenomenon, the constriction of blood vessels in the ears, nose, fingers or toes
• Lung disease is a major cause of scleroderma-related deaths.

For the Media

If you would like to set up an interview with a patient, support group or chapter leader, physician or health care professional, or someone from the Scleroderma Foundation, please call Christina Relacion, Communications Manager, at (800) 722-4673. We are happy to assist with your stories and media requests.