National Scleroderma Foundation

National Scleroderma Foundation A relentless force in finding a cure and improving the lives of people affected by . Information is provided to keep the readers informed.
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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 ed

ucation 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.

🔗: https://ow.ly/WNtX50ZyBYn📬 We want to hear from you!Please take a moment to complete our brief newsletter survey. You...
08/30/2026

🔗: https://ow.ly/WNtX50ZyBYn

📬 We want to hear from you!

Please take a moment to complete our brief newsletter survey.

Your feedback will help us improve our content and better serve the needs and interests of the scleroderma community.

Thank you for your time and support. 💙

🔗: https://scleroderma.org/global-webinar/Calling all scleroderma researchers! 🔬Don’t miss our upcoming Global Webinar o...
08/29/2026

🔗: https://scleroderma.org/global-webinar/

Calling all scleroderma researchers! 🔬

Don’t miss our upcoming Global Webinar on Friday, September 11!

Join us to explore the latest advancements in scleroderma research and connect with fellow experts in the field.

All researchers and trainees are welcome.

🔗: https://ow.ly/uzha50ZByoUScleroderma can look different from person to person, but recognizing the early signs can ma...
08/28/2026

🔗: https://ow.ly/uzha50ZByoU

Scleroderma can look different from person to person, but recognizing the early signs can make a meaningful difference!

Some common symptoms may include skin changes, swelling, fatigue, digestive issues, joint pain, and Raynaud’s phenomenon.

If you or someone you love is noticing these symptoms, learning more is a powerful first step.

Visit our website to explore what scleroderma can look and feel like and find trusted resources to guide you forward.

Scleroderma voices on Capitol Hill! 📣A few weeks ago, two of our community members joined RDLA’s Rare Across America, me...
08/27/2026

Scleroderma voices on Capitol Hill! 📣

A few weeks ago, two of our community members joined RDLA’s Rare Across America, meeting virtually with the offices of Sen. Michael Bennet and Sen. John Hickenlooper.

They helped bring the experiences and priorities of the scleroderma community directly to policymakers.

Thank you to our advocates for using your voices to make a difference! 💙

It’s National Dog Day, and we think that deserves a round of a-paws! 🐾Today we’re celebrating the four-legged friends wh...
08/26/2026

It’s National Dog Day, and we think that deserves a round of a-paws! 🐾

Today we’re celebrating the four-legged friends who bring so much joy, comfort, and love into our lives.

Drop a photo of your pup in the comments, we’d love to see them! 💙

Our Indiana community took a walk on the WILD side this weekend! 🦁Thank you to everyone who joined us at the zoo in Sout...
08/25/2026

Our Indiana community took a walk on the WILD side this weekend! 🦁

Thank you to everyone who joined us at the zoo in South Bend for Stepping Out to Cure Scleroderma!

🔗: https://ow.ly/5vhp50ZBvQbHow prepared do you feel walking into a doctor’s appointment? 🩺In this breakout session, Kar...
08/24/2026

🔗: https://ow.ly/5vhp50ZBvQb

How prepared do you feel walking into a doctor’s appointment? 🩺

In this breakout session, Karen Gottesman shares practical strategies for making the most of your appointments.

From tracking updates to communicating with your care team and seeking a second opinion, this session offers tips to help you feel more prepared.

Sundays are the perfect reset. It’s a chance to recharge, refocus, and prepare for the week ahead. 💙At the National Scle...
08/23/2026

Sundays are the perfect reset. It’s a chance to recharge, refocus, and prepare for the week ahead. 💙

At the National Scleroderma Foundation, we believe connection, knowledge, and community fuel strength.

Join a support group. Explore educational resources. Connect through Inspire. Watch videos on our YouTube channel. There are so many ways to take a positive step forward.

Which one will YOU choose to start your week off right? ✨

A closer look at scleroderma research. 🔬Research is an important part of the National Scleroderma Conference. Our Resear...
08/22/2026

A closer look at scleroderma research. 🔬

Research is an important part of the National Scleroderma Conference.

Our Research Poster Hall gives researchers and clinicians a space to showcase their work.

This year’s posters featured original research, clinical studies, translational science, and patient-centered work.

We’re proud to provide a space to share this important research with our community. 💙

Have you heard of ILD?💬🫁 ILD, or interstitial lung disease, is a condition that causes scarring and/or inflammation in t...
08/21/2026

Have you heard of ILD?💬🫁 ILD, or 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.

Registration will open soon!

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

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