On Rare Disease Day, February 28, the National Scleroderma Foundation will join the global rare disease movement to spread awareness about scleroderma.
As a rare disease, scleroderma is often misdiagnosed and misunderstood, making it challenging for individuals affected by the disease to receive the help and support they need.
Diane Lee, President of the Chapter Advisory Committee for the National Scleroderma Foundation Texas Bluebonnet Chapter, attests to the challenges:
“I have scleroderma with an overlap of lupus. If I tell someone that I have scleroderma and lupus, they will remember lupus, because it is easy to say and because they’ve heard of it. But not so with scleroderma. First, they’ve probably never heard of scleroderma, and second, if they have heard of scleroderma, they most often will mispronounce the name. And finally, the disease is so complex that it can’t be explained in a simple way that can be grasped easily by most people.”
The National Scleroderma Foundation understands the challenges that come with fighting a rare disease, which is why the Foundation places such a strong emphasis on awareness and advocacy. As more people come to know about scleroderma, who it affects, and how they can help, support for research to discover the cause and understand the mechanism will increase, also paving the way for early detection and diagnosis, which is critical for anyone’s journey with scleroderma.
Scleroderma affects connective tissue and the vascular system by producing excessive collagen. This causes fibrosis in the skin or internal organs. The result can be disfigurement or disability, and it can be life-threatening. No one knows what causes scleroderma and there is no cure. Scientific advances depend on support from generous donors and novel ideas from the best and brightest investigators in the field.
More than 300,000 Americans are estimated to live with some form of scleroderma. Scleroderma can affect young adults, children, grandparents, and teenagers. The face of scleroderma includes people of all ages, genders, and backgrounds.
ABOUT RARE DISEASE DAY
The National Scleroderma Foundation is proud to stand with the 300 million people worldwide affected by all rare diseases.
Rare Disease Day is a global movement coordinated by EURORDIS (Rare Disease Europe) to raise awareness and improve equity in social opportunity, healthcare, and diagnostic and therapeutic access for all people affected by rare diseases. Since its inception in 2008, Rare Disease Day has played a critical part in building an international rare disease community that is multi-disease, global, and diverse, but united in purpose.
Every year, Rare Disease Day is observed on February 28 (or 29 in leap years)—the rarest day of the year. Today, it boasts more than 65 national alliance patient organization partners. Rare Disease Day provides an energy and focus that elevates the stories of people affected by a rare disease and also drives donations to causes that help.
HOW YOU CAN HELP
To support the critical mission work of the National Scleroderma Foundation and to help us raise awareness about scleroderma, we invite you to make a gift in honor of Rare Disease Day at scleroderma.org/donate.
If you would like to make a gift by mail, please mail a check made out to National Scleroderma Foundation and send to 300 Rosewood Dr, Danvers, MA 01923.
ABOUT THE NATIONAL SCLERODERMA FOUNDATION
The National Scleroderma Foundation is comprised of thousands of individuals across the United States united by their shared mission to advance medical research, promote disease awareness, and provide support and education to people with scleroderma, their families, and support networks. As the leading nonprofit funder of peer-reviewed scleroderma research, the Foundation fosters innovative research to discover the cause, understand the mechanisms and overcome scleroderma forever. The Foundation’s Medical & Scientific Advisory Board features world-renowned scleroderma experts who advise on health-related policies. The Foundation’s signature National Scleroderma Conference provides access to leading scleroderma experts and up-to-date information, while serving as the central meeting ground for the scleroderma community. And, the Foundation’s network of chapters operates in 32 states and Washington, D.C. to provide emotional support and scleroderma education to individuals and families and to drive fundraising to fuel the mission. To learn more, visit www.scleroderma.org.
Original Release: February 16, 2022