Scleroderma Research Foundation Frequently Asked Questions (FAQ)
About The SRF
The Scleroderma Research Foundation (SRF) is the largest nonprofit investor in scleroderma research in the United States. Our mission is to fund and facilitate the most promising, highest quality research aimed at improved therapies and, ultimately, a cure for scleroderma. Until that time comes, we are dedicated to providing education, raising awareness, and sharing the most up-to-date information that the scleroderma community needs.
Yes! The Scleroderma Research Foundation (SRF) is a 501(c)3 nonprofit (TAX ID: 68-0087234). All gifts made to the SRF are fully deductible to the extent allowed by law. You can go here for more information, email us at donations@srfcure.org, or give us a call at 800.441.CURE (2873) if you have any questions.
No, we are two separate organizations. Both organizations are dedicated to helping those affected by scleroderma, just in different ways. The Scleroderma Research Foundation is dedicated to accelerating research towards a cure. While we work steadfastly towards ending this disease, we are also committed to supporting our patient community with the critical educational information they need today.
About Scleroderma
Scleroderma is a chronic autoimmune disease that causes inflammation and excessive collagen production in the body, leading to the hardening and tightening of skin and connective tissues. In fact, the word “scleroderma” literally means “hard skin.” The disease can affect not only the skin, but also blood vessels, connective tissue, and internal organs, including the lungs, heart, kidneys, and digestive system.
Symptoms and disease progression vary from person to person.
Learn more on the What Is Scleroderma page.
Scleroderma is considered a rare disease. An estimated 100,000 people in the United States are living with systemic sclerosis, with a similar number in Europe. Over one million people may be living with scleroderma globally.
(Source: Bergamasco A, Hartmann N, Wallace L, Verpillat P. Epidemiology of systemic sclerosis and systemic sclerosis-associated interstitial lung disease. Clin Epidemiol. 2019 Apr 18;11:257-273. doi: 10.2147/CLEP.S191418. PMID: 31114386; PMCID: PMC6497473. )
The symptoms of scleroderma vary widely from person to person. In the most common form, frequent symptoms include skin thickening and hardening and Raynaud’s Phenomenon. The disease can also affect internal organs, including the lungs, heart, kidneys, and digestive system.
Raynaud’s phenomenon is a condition that results in decreased blood flow to your fingers and toes resulting in color changes. In this condition, excess collagen in the vessel walls narrows the blood vessels. Most people with Raynaud’s will NOT develop scleroderma. On the other hand, nearly 90% of those with scleroderma have Raynaud’s phenomenon symptoms. For this reason, Raynaud’s symptoms are a “red flag” that can help lead to earlier diagnosis and treatment of scleroderma.
There is currently no cure for scleroderma, though treatments exist to help manage symptoms and slow disease progression. The SRF is unwavering in our commitment to boldly advancing scleroderma research so that we may one day end this disease.
Resources
While we cannot make referrals, we maintain a list of scleroderma treatment centers across the U.S. on our Treatment Centers page. More information about international treatment centers is coming soon.
We offer educational resources, webinars, research updates, and community information for people living with scleroderma and their caregivers.
Helpful resources include:
The SRF does not have any support groups, but we are proud to partner with other scleroderma-focused organizations that do. Learn more about what these organizations have to offer here.
Research
The SRF funds a diverse portfolio of scleroderma research projects led by top-tier investigators, including investigator-initiated grants, postdoctoral fellowships, and Early Career Grants for clinician-researchers. Our Scientific Advisory Board, made up of some of the world’s most honored and distinguished scientists, are a key part of this process. They guide the SRF’s research program, evaluate research proposals, and make funding recommendations. While building a well-rounded portfolio of projects, we evaluate how each project may address one or more of the following objectives: understanding who gets scleroderma, unraveling how scleroderma progresses, and helping to find a cure. We also lead two major initiatives—the CONQUER Registry and CONQUEST, a clinical trial.
Research funding decisions are guided by the Scientific Advisory Board, a group of the world’s leading scientists and researchers who review and evaluate research opportunities throughout the year.
Learn more about our Scientific Advisory Board and Science Workshop.
The SRF supports scleroderma research through several grant mechanisms, including investigator-initiated research grants, postdoctoral fellowship grants, and Early Career Grants for clinician-researchers.
Donating your body is a generous and thoughtful step to consider. The Scleroderma Research Foundation doesn’t directly coordinate or assist with body donation, but we understand how meaningful and time-sensitive these arrangements can be. This kind of gift can make a real difference in helping researchers better understand scleroderma and its many effects.
We recommend starting by asking your rheumatologist if they’re aware of any relevant programs and also reaching out directly to institutions that specialize in scleroderma research, as they may be able to advise on the appropriate steps for your specific situation.
You can find a list of scleroderma treatment centers supported by SRF here: SRF Scleroderma Treatment Centers.
Getting Involved & Donating
There are many ways to support the SRF – directly helping to advance groundbreaking research, raise awareness, and bring hope to those affected by this disease. Whether you make a donation, join the Cure Crew, participate in Cool Comedy • Hot Cuisine, create a fundraiser, or leave a planned gift – you help to move research forward.
Learn more on the Ways to Give page.
Yes. We accept gifts of stock, mutual funds, bonds, and other securities. Find details on how to make a gift of this type on the Wire Transfer or Stock Gifts page.
To make a tribute gift online, or to find the details on making a gift by mail, visit our Tribute or Memorial Gifts page. You can also contact the SRF directly at donations@srfcure.org or 800.441.CURE (2873)
For donation questions or replacement receipts, contact:
donations@srfcure.org
800.441.CURE (2873)
The Scleroderma Research Foundation is committed to transparency and responsible stewardship of donations. 83% of your support goes directly towards the SRF’s research and education programs. Our commitment to fiscal responsibility is backed by the highest ratings from Charity Navigator and Candid (formerly Guidestar), the largest and most trusted independent evaluators of nonprofit organizations.
Learn more in the Annual Report and about our research initiatives on the About Our Research page.
You can host a fundraiser for the Scleroderma Research Foundation using the SRF donation portal or by creating a Facebook fundraiser. Consider joining our Cure Crew to fundraise and advocate for a cure.
Learn more at Online Fundraisers
The SRF has a grassroots group of volunteers called the Cure Crew, that raises awareness about scleroderma and the funds to support SRF’s research. Cure Crew members around the world are united by a shared belief in the power of research to help people with scleroderma live longer, fuller lives, and lead us closer to a cure. Learn more
The best ways to stay informed are to sign up for our monthly newsletter called eNews, follow us on Instagram, LinkedIn, X, Facebook, YouTube, TikTok, Threads.
and subscribe to our YouTube channel, where you’ll find recordings of past webinars and educational content.
We’d love to hear your story. Personal experiences from the scleroderma community are incredibly meaningful and help raise awareness for the disease. Reach out to us at info@srfcure.org and our communications team will be in touch about how we can share your experiences with the community.
If your question was not answered here, please send us a message. Your privacy is important to us; please do not email medical records.