Today, on Rare Disease Day, the National Scleroderma Foundation (Foundation) joins the global community in raising awareness and advocating for greater support for those affected by rare diseases, particularly scleroderma. Rare Disease Day serves as a poignant reminder of the challenges faced by individuals living with rare diseases and the urgent need for increased understanding, research, and support.
Scleroderma affects more than 300,000 individuals across the U.S. and is widely unknown. For those living with scleroderma, Rare Disease Day is an opportunity to teach others about scleroderma and connect with those experiencing similar scleroderma journeys.
Scleroderma is a rare rheumatic disease that affects connective tissue and the vascular system causing an overproduction of collagen (fibrosis) in the skin (localized scleroderma), and the internal organs (systemic sclerosis), which can be life-threatening. Anyone can have scleroderma. The cause is not yet known, and there is no cure.
“We stand in solidarity with the rare disease community on this important day,” said Mary Wheatley, CEO of the National Scleroderma Foundation. “Scleroderma presents unique obstacles to patients and their families, from challenging symptoms to a lack of effective treatments. By raising awareness and fostering collaboration, we can empower those living with scleroderma and drive progress towards improved outcomes.”
To further raise awareness of Rare Disease Day, the National Organization for Rare Disorders (NORD) is taking its mission of creating a brighter future for people with rare diseases to NBC’s Today Show in New York City. Many individuals from the scleroderma community will join at Rockefeller Plaza to advocate for faster diagnoses, accelerated research, new treatments, and patient support to help the 1 in 10 Americans living with rare diseases.
If you live with scleroderma, Rare Disease Day is an opportunity to get involved, find community, and raise awareness. Join a support group, learn how to advocate, or check out our library of educational resources at scleroderma.org.
To learn more about the unique journeys of those living with scleroderma, visit scleroderma.org/rare-disease-day.
ABOUT NATIONAL SCLERODERMA FOUNDATION
A relentless force in finding a cure and improving the lives of people affected by scleroderma, the National Scleroderma Foundation advances medical research, promotes disease awareness, and provides support and education to people with scleroderma, their families, and support networks. Supported by a network of thousands of individuals across the United States, the Foundation is the leading nonprofit funder of peer-reviewed research to discover the cause, understand the mechanisms, and overcome scleroderma forever.
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