Scleroderma Research Foundation

Scleroderma Research Foundation America's leading nonprofit investor in medical research aimed at finding better treatments and a cure for scleroderma.
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What is scleroderma? 🔎 Swipe to learn more about what it is and how it affects those living with the disease. ➡️Sclerode...
06/05/2026

What is scleroderma? 🔎 Swipe to learn more about what it is and how it affects those living with the disease. ➡️

Scleroderma is an autoimmune disease that causes the body to harden and tighten its own skin and connective tissues, and in the most serious cases, damage the heart, lungs, and digestive system. It is a heterogeneous disease, which means that it looks different in every single person who has it.

Although an estimated 300,000 Americans have scleroderma, not enough people know it exists. That’s exactly why we .

June is Scleroderma Awareness Month, and we need you to join us to . Because a lack of awareness leads to delayed diagnoses. Because the people living with this disease deserve to be seen and heard. Because scleroderma must END.

This month, the Scleroderma Research Foundation, the Scleroderma Foundation of California, Scleroderma Foundation of Greater Chicago, and Scleroderma Outreach Northwest are uniting forces–because when more voices join us to , we can get louder and reach farther than ever before.

Every way that you brings us closer to a world where scleroderma is understood, treated, and one day cured.

Learn more about scleroderma, its complications, and how you can get involved this Scleroderma Awareness Month at the links in the first comment below.

"Research is the key to not only finding a cure but to improving treatments and quality of life for those living with sc...
06/04/2026

"Research is the key to not only finding a cure but to improving treatments and quality of life for those living with scleroderma," says Alex P. (dx 2022), pictured in her new sweatshirt. "The treatment options available for scleroderma today have improved greatly from even just 10 years ago and that's all due to research!"

Research and awareness go hand in hand—and that's the idea behind . "I because many people have no idea what scleroderma is," Alex says. "Unless there is scleroderma awareness, there will never be better treatments or a cure."

Launched by the SRF, this movement is built on the belief that the more people who know about scleroderma, the closer this community gets to a world without it. June is Scleroderma Awareness Month, and every person who speaks up and joins in to helps make a future without scleroderma possible.

"People pay attention to clothing—I know I do—and by wearing my sweatshirt out, I know that it can either start a conversation about what scleroderma is, or people who see it will be curious enough to google 'scleroderma' and learn on their own," she says. Now, you can join Alex in wearing your support on your sleeve. The SRF Merch Shop is officially open, and you can score your hats, tees, sweatshirts, bags, and more.

While the SRF does not receive any funds or profits through shop sales, this store was launched so that the community can raise awareness together in style. Order now and you'll have your gear in hand just in time for World Scleroderma Day on June 29.

Shop now and using the links in the comments below!

06/03/2026

Check out this clip to hear why Tomisa S. (dx 1993) is joining us on June 11 for the 5th Annual SRF Scleroderma Patient Forum—and why you should register now to secure your spot!

There's still time to sign up for the SRF's annual educational event:

đź“… Thursday, June 11th
⏰ 9:00 am PDT / 12:00 pm EDT
đź’» FREE and online

Now in its 5th year, the SRF's annual Scleroderma Patient Forum brings together leading scleroderma clinicians and researchers for educational sessions on the latest research and symptom management and live Q&As.

Whether you're living with scleroderma or supporting someone who is, there is something for everyone at the Forum. Sign up now using the link in the first comment below, and you'll be entered into a special raffle to win a prize!

June is here—and so is Scleroderma Awareness Month. We’re asking you to say it with us: . 📣Scleroderma is complicated, ...
06/01/2026

June is here—and so is Scleroderma Awareness Month. We’re asking you to say it with us: . 📣

Scleroderma is complicated, often invisible, and still widely unknown. This leads to delays in diagnosis and treatment, and real harm to those living with the disease. Raising awareness is how we will change that.

This June, The Scleroderma Research Foundation, Scleroderma Foundation of California, Scleroderma Foundation of Greater Chicago, and Scleroderma Outreach Northwest are uniting forces–because when more voices join us to , we can get louder and reach farther than ever before.

We need YOU to join us! Here are just some of the ways you can make a difference this Scleroderma Awareness Month:

🖼️ Use our profile photo frame: Add the custom profile photo frame on your social media accounts to showcase your support for the cause all month long.

đź“ą Record a video: Share why you choose to and what this month means to you, whether you live with the disease, or care for someone who does.

đź’¬ Have a conversation: in your community, whether at home, at work, or at a local event.

đź“Ł Amplify: Re-share posts from across our coalition and help us reach beyond our existing audiences.

Every way that you brings us closer to a world where scleroderma is understood, treated, and one day cured. Learn more and find resources to make an impact in the links in the first comment below.

05/29/2026

Paul D., dx 2017, invites you to join him at this year's Scleroderma Patient Forum! There's still time to register for the SRF's annual educational event:

đź“… Thursday, June 11th

⏰ 9:00 am PDT / 12:00 pm EDT

đź’» Online & FREE to attend

Now in it's fifth year, the forum features educational sessions on the latest research and symptom management, live Q&A's with leading scleroderma clinicians and researchers, and opportunities to win prizes. There's something for everyone—whether you live with scleroderma or you know someone affected by the disease.

Sign up now for year's Scleroderma Patient Forum, using the link in the first comment below. đź”—

It’s almost Scleroderma Awareness Month–swipe through to see how you can get involved and ! ➡️Too many people have neve...
05/28/2026

It’s almost Scleroderma Awareness Month–swipe through to see how you can get involved and ! ➡️

Too many people have never heard of scleroderma, but with awareness, that can change. This June, your voice matters. When you , you help create real progress toward better outcomes for those living with this disease and bring us one step closer to a cure.

Awareness grows when we act together, and that's why organizations across the scleroderma community are joining forces this June. The Scleroderma Research Foundation, Scleroderma Foundation of California, Scleroderma Foundation of Greater Chicago, Scleroderma Outreach Northwest, and more are all in to —but we can't do it without YOU.

No matter how you show up, your participation makes a difference. Explore resources for Scleroderma Awareness Month and learn more about ways you can take action, linked in the first comment below.


Clinical trial eligibility can sometimes seem confusing, but the criteria for enrolling are rooted in the science of how...
05/26/2026

Clinical trial eligibility can sometimes seem confusing, but the criteria for enrolling are rooted in the science of how scleroderma progresses.

In many clinical trials, only patients who were recently diagnosed are included. This is because many diseases change over time, both in the rate of progression of the disease and the symptoms experienced. For a clinical trial, it is important to have a relatively homogenous population, meaning a group of patients in similar stages of the disease and experiencing similar symptoms. This makes it easier to detect differences in disease activity during the study between those receiving the experimental drug and those receiving a placebo.

In addition, there are specific reasons for limiting disease duration in scleroderma studies. Early-stage scleroderma is characterized mostly by inflammation, while later stage disease is dominated by fibrosis. Most clinical studies focus on enrolling one of these two populations, depending on how the experimental drug is expected to work.

While not everyone can join every trial, each study contributes to the larger body of knowledge that will ultimately benefit all scleroderma patients. Every piece of research builds on previous findings, paving the way for new, more inclusive trials and better treatments.

Learn more about clinical trials on our website, linked in the first comment below.

"She handled everything that came her way with so much grace and strength, and she never complained," says Taylor S. of ...
05/22/2026

"She handled everything that came her way with so much grace and strength, and she never complained," says Taylor S. of her late aunt Carol (dx 2023). "No matter how hard things got, she still found a way to smile and share her infectious laugh with all of us. That is something I will carry with me forever."

For Taylor's family, the earliest warning signs of Carol's condition were easy to overlook at first. "The first symptom she noticed was Raynaud's," she recalls. "Her hands and feet were often purple and extremely cold, followed by swelling and stiffness. That is when we really started to become concerned."

Carol's symptoms progressed rapidly, and she soon began to suffer from kidney issues, increased stiffness and thickening throughout her body, changes in her voice, and significant weight loss. "She had to go through dialysis three to five days a week," Taylor shares. "It was heartbreaking to see someone so strong go through that."

Through it all, her family refused to leave her side. "My Uncle Rick and her boys —Danny, Kurt, and Ricky— were everything to her, and her rock through it all," Taylor says. "No matter what she needed, they were always there to help without hesitation. We truly came together as a family to support her in every way possible, along with her friends, who were there time and time again."

Taylor did everything she could to show up for her Aunt Carol in the ways that mattered most. "I would visit her whenever I could. At the time I was also taking care of my Grandma on hospice (my aunt’s mother) but I always made sure to make it to my aunts house, or the hospital. Sometimes I would even bring my whole nail kit over to give her manicures and pedicures," she says. "It was one of the few things that really made her feel like herself and feel pretty, especially since she was unable to use her hands for just about anything. Those moments meant so much."

Taylor's advice to others supporting a loved one with scleroderma is simple: "Just be there. Be present through both the good and the bad times. Those small acts of love and support truly matter more than people realize."

For Taylor, turning that grief into action has become deeply personal. "Many people are still unaware of what scleroderma is, and I want to help change that," she says. "We need continued research to better understand and treat this challenging disease so that other families do not have to go through the same pain, and hopefully one day, a cure."

Thank you, Taylor, for honoring Carol's memory and sharing her story. To learn more about the SRF's work and how you can help advance the research that families like Taylor's are counting on, visit our website, linked in the first comment below.

05/21/2026

Check out this highlight from Dr. Torok's presentation from the Scleroderma Patient Forum archives on what makes scleroderma unique in kids. This year, she's back and joined by colleagues to dig into what that means for managing it.

You won't want to miss it: Kathryn Torok, MD (UPMC Children's Hospital of Pittsburgh) will be returning to the SRF Scleroderma Patient Forum on June 11 at 9AM PST/12 PM EST for a new session on helping teens manage their scleroderma.

Along with UPMC colleagues Alexandra Chop, MD and Colleen Mains, LCSW, she will tackle one of the most challenging aspects of juvenile scleroderma care: keeping teens engaged in their treatment plans. From building self-advocacy to preparing for the transition to adult care, this is a session for everyone who wants to learn about how to best support the young adults in their life who live with scleroderma.

The SRF Scleroderma Patient Forum is your opportunity to hear from and get your questions answered by the clinicians and researchers shaping the future of scleroderma care—all at our annual FREE online event. Plus, registering enters you to win SRF swag in honor of the event's 5-year anniversary! Check out the full agenda and register for the Forum at the link in the first comment below.

Join the 2026 SRF Annual Research Challenge and help fund the critical science that brings us closer to a cure for scler...
05/19/2026

Join the 2026 SRF Annual Research Challenge and help fund the critical science that brings us closer to a cure for scleroderma. And thanks to the Schimberg Family Foundation, every dollar you give will be matched, up to $50,000.

Your generosity supports scientists dedicated to understanding and defeating this disease, like Joe DeRisi, PhD, at the University of California, San Francisco.

DeRisi's group originally focused on infectious disease and participated in the discovery of the original SARS virus in 2003. The SRF recruited the group to focus their expertise on autoimmunity using new technology to leverage the large and unique scleroderma patient cohorts that the SRF and affiliated clinicians have assembled through the CONQUER patient registry.

Dr. DeRisi and his colleagues are currently investigating the role of autoantibodies in scleroderma, aiming to uncover hidden patterns that drive disease. The project will enable the largest and most comprehensive look to date at the role of scleroderma autoantibodies—and the potential role of viruses as triggers of autoimmunity—leading to insights into disease development, subtypes, and potential new therapies.

There is no cure for scleroderma—yet. But research like this is changing what’s possible, and you can be part of what comes next.

Please make your gift to the Research Challenge today at the link in the first comment below. This matching challenge won’t last, but YOUR IMPACT WILL!

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