National Scleroderma Foundation
A relentless force in finding a cure and improving the lives of people affected by #scleroderma. Information is provided to keep the readers informed.
The National Scleroderma Foundation is a 501(c)(3) nonprofit organization founded in 1998 to advance medical research, promote disease awareness, and provide 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 helps those living with scleroderma by providing support and education at the same time that it funds peer-reviewed scleroderma research. Since its founding, the Foundation has committed over $30 Million to discover the cause, understand the mechanism, and overcome scleroderma forever. The Foundation is home to the National Scleroderma Conference—the only educational program of its kind and scope in the U.S.—which provides access to leading scleroderma experts and up-to-date information while serving as the central meeting ground for the scleroderma community. In addition, the Foundation's Stepping Out to Cure Scleroderma walks are the country's premier awareness and fundraising events which are organized by the Foundation’s local chapters and take place throughout the year at multiple locations and virtually across the country. The Foundation is led by 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 exemplary professional staff committed to advancing its mission through the organization's cultural values of care, connection, diversity, integrity, meaningful work, and trust. Disclaimer: The National Scleroderma Foundation in no way endorses any drugs, treatments, clinical trials, or studies reported on our page. Because the manifestations and severity of scleroderma vary among individuals, personalized medical management is essential. Therefore, it is strongly recommended that all drugs and treatments be discussed with the reader’s physician(s) for proper evaluation and treatment.
09/21/2026
🔗: https://ow.ly/qJGo50ZNt39
Join us for our next !
Learn how current legislative developments impact the scleroderma community and discover the Foundation’s advocacy priorities.
Whether you’re involved in advocacy or just want to learn more, we hope you’ll join us!
09/20/2026
The HOPE Line is the best way to connect with our team for any questions you might have! 💬
This free service offers information, resources, and support for people living with scleroderma, caregivers, families, and the public.
📞 Call (800) 722-4673 (Mon–Fri, 8:30 am–5 pm ET) or email [email protected].
Our trained team will ensure you get the answers and help you need!
09/19/2026
🔗: https://scleroderma.org/steppingout/
Summer may be winding down, but Stepping Out season isn’t over yet! 👟
Walks are still happening across the country this fall, with upcoming events in Little Rock, St. Louis, Palo Alto and more!
There’s still time to join your local scleroderma community and Step Out with us.
09/18/2026
Register today for our next webinar: https://scleroderma.org/sept23!
Lauren N. Smith, MD, assistant professor of medicine at MedStar Georgetown University Hospital, will lead an important conversation exploring the role of clinical trials in advancing scleroderma research and improving health outcomes within the BIPOC communities.
09/17/2026
Not all symptoms of scleroderma are visible.
Fatigue, pain, and other challenges can impact daily life even if someone “looks fine” on the outside.
By learning the facts, we can better support those living with scleroderma and help spread awareness.
💬 What’s one thing you wish more people understood about living with scleroderma?
09/16/2026
🔗: https://ow.ly/jito50ZLVxA
September 16 is Interstitial Lung Disease Day!
Interstitial lung disease (ILD) is a serious complication of scleroderma that can affect breathing and lung function.
Today, we’re raising awareness of ILD and the importance of monitoring lung health, recognizing symptoms, and having ongoing conversations with your healthcare team.
09/15/2026
🔗: https://ow.ly/tFew50ZLvSE
Navigating life with a rare disease can be challenging, but support is closer than you think.
The National Scleroderma Foundation’s local chapters bring hope and support right to your neighborhood. 🏡
Discover your local chapter and see how you can get involved today! 🌎
09/14/2026
People living with scleroderma have a higher risk of developing Pulmonary Hypertension.
Pulmonary Hypertension is a serious condition where high blood pressure builds up in the lungs, making it harder for the heart to pump blood.
Because scleroderma can affect the lungs and blood vessels in different ways, it’s important for patients to be regularly screened for PH.
Early detection and treatment can make a big difference.
09/13/2026
🔗: https://ow.ly/yBVS50ZukWC
Looking for a way to show your support? 💙
Visit our online store to explore designs inspired by Beacons of Hope - celebrating strength, community, and hope.
Shop today and wear your support proudly. ✨
09/12/2026
🔗: https://ow.ly/Rm4o50ZLuFE
If you’re living with both scleroderma and ILD, this webinar is for you. Interstitial lung disease is a condition that causes scarring and/or inflammation in the lungs. There is no cure. And scleroderma is a known cause of ILD. 🫁
But there’s hope 💙 We’ve partnered with the Pulmonary Fibrosis Foundation and 12 other organizations to bring you ILD Day, a one-hour webinar presentation that you can join from anywhere on Zoom!
🎯 This year, we’re talking about precision medicine and ILD. Precision medicine is an innovative healthcare model that tailors disease prevention and treatment to an individual's unique genes, lifestyle, and environment.
Click here to claim your Sponsored Listing.
Category
Website
Address
PO Box 411533
Boston, MA
02241
Opening Hours
| Monday | 8:30am - 5pm |
| Tuesday | 8:30am - 5pm |
| Wednesday | 8:30am - 5pm |
| Thursday | 8:30am - 5pm |
| Friday | 8:30am - 5pm |