Advances in Scleroderma Research – Global Webinar is a series of virtual meetings open to the global community of scleroderma researchers. This virtual forum provides a venue to bring together the global scleroderma research community to hear the latest breakthroughs from the field. Each session will feature recent discoveries and high impact publications related to all aspects of scleroderma science.

Date: Friday, December 18, 2026
Time: 9:00 a.m. – 10:30 a.m. ET
Registration: Please click here to register in advance.

Speakers:
Christian Stockmann, PhD – Selective Immunotherapeutic Targeting of the Fibrotic Niche Christian Stockmann
Eduardo Marbán, MD, PhD – RNA Drug TY1 Reverses Scleroderma: Poised for Translation Participation is free of charge and open to all interested scleroderma researchers, including trainees.

The Advances in Scleroderma Research Global Webinars are not recorded or offered on demand. We look forward to seeing you at the webinar. Learn more about the Global Webinar series and other Foundation research opportunities: Global Webinar – National Scleroderma Foundation

The National Scleroderma Foundation joins the scleroderma community in mourning the passing of Dr. Thomas A. Medsger Jr., a true giant in the field whose work profoundly shaped our understanding of systemic sclerosis and the care of people living with this complex disease.

“The scleroderma community lost a giant on August 15,” Chair of the Foundation’s Board of Directors, Carol Feghali-Bostwick, PhD, said. “Dr. Thomas Medsger was an amazing mentor who made an indelible impact on me. He was smart, knowledgeable, humble, compassionate, caring, and so passionate about taking care of his scleroderma patients and advancing the scleroderma field. His legacy lives on in the numerous people he mentored and trained who continue his important work.”

Throughout his remarkable career, Dr. Medsger was a pioneering clinician, researcher, educator, and mentor. As professor of medicine at the University of Pittsburgh, he made major contributions to the classification, natural history, and clinical understanding of systemic sclerosis. He co-created the University of Pittsburgh Scleroderma Patient Registry, which grew to include more than 4,000 patients, and his influence continues through the many clinicians and investigators he trained. Ten of his former research trainees went on to establish systemic sclerosis research and patient-care programs at other institutions.

“Tom Medsger has been the cornerstone of my whole career,” Virginia Steen, MD, said, “from his exceptional teaching of rheumatology when I was a third-year medical student which got me ‘hooked’ on rheumatology, to my first day of fellowship when he handed me 300 5×7 cards of Gerry Rodnan’s scleroderma patients to put into the computer, which was the start of the Pittsburgh Scleroderma Database, to the decades of collaboration and passion in working together.”

The Foundation proudly recognized Dr. Medsger as Doctor of the Year in 2005, and awarded him the Lifetime Achievement Award in 2009, honoring his career-long contributions to scleroderma research and treatment.

“His enthusiasm, support, optimism, his great red pen for editing and guidance through all aspect of my career, as well as so many others in scleroderma, have allowed the scleroderma community to benefit and have a much better understanding of all aspects of scleroderma,” Dr. Steen said. “Our final writing collaboration just a couple of years ago was the co-writing of an article for the ‘Giants of Rheumatology’ on Gerry Rodnan, which brought us full circle with all the memories and achievements. Now, Tom is joining the others who are giants of scleroderma. We all will miss him,” she added.

Dr. Medsger’s legacy lives not only in the knowledge he advanced, but also in the patients he cared for, the colleagues and students he inspired, and the hope he gave to people and families affected by scleroderma. His impact will be felt for generations.

On behalf of our board of directors, staff, volunteers, and the entire National Scleroderma Foundation community, we extend our heartfelt condolences to Dr. Medsger’s family, friends, colleagues, former trainees, and patients. We remember him with profound gratitude and will carry his dedication forward in our shared pursuit of better treatments and, ultimately, a cure.

Dr. Thomas A. Medsger Jr., with Dr. Carol Feghali-Bostwick, after receiving the Lifetime Achievement Award from the National Scleroderma Foundation.

The National Scleroderma Foundation honors Dr. Medsger’s legacy. If you would like to make a gift to the National Scleroderma Foundation in memory of Dr. Medsger, please visit https://scleroderma.org/medsger. At the family’s request, all donations made in memory of Dr. Medsger will be restricted to the Foundation’s Research Program, unless otherwise directed by the donor.

2026 Pre-Doctoral Summer Fellowship Awardees

Audrey Galimba, PhD (c)

Medical University of South Carolina

Chen-Yu Wang, PhD (c)

Dartmouth College

Chu Long, PhD (c)

Boston University

The Foundation’s Role

The National Scleroderma Foundation initiated and led the inclusion of scleroderma in the AMP AIM expansion, has committed significant funding to this program, and serves on the Steering Committee.

“This is the power of a national organization backed by a community that is committed to advocacy and driving the future of scleroderma research,” Wheatley said. “We led the charge for this monumental project that will change the future of research and patient care.”

Through this collaboration, leading researchers across top institutions will work together to study scleroderma at an unprecedented level of detail. By examining individual cells from patient samples, the team aims to better understand how the immune system, blood vessels, and scar-forming (fibrotic) processes interact to drive the disease.

The Foundation leveraged partnerships with research institutes across the country to help identify the research teams that will participate in this project. All the research locations have been recognized by the Foundation as Designated Scleroderma Research and Treatment Centers. The following institutions will be participating in the scleroderma disease team:

Boston University Medical Center
Hospital for Special Surgery
University of Michigan
University of Pittsburgh Medical Center
University of Texas Health Sciences Center, Houston
Yale University

Designated Scleroderma Research and Treatment Center Seal

By bringing together cutting-edge science, shared data, and a collaborative network of experts, this partnership represents a major step toward better treatment, and ultimately, a cure.

This is just the beginning of an exciting new era of scleroderma research. The Foundation will continue to provide updates as researchers uncover new information and reach new milestones in our understanding of scleroderma.

2026 Grant Award Recipients

Gulsen Ozen, MD

Daniel Batlle, MD

Matthew Dapas, PhD

Eliza Tsou, PhD

Rachel Knipe, MD

Kaveh Ardalan, MD, MS

Samuel Good, MD

The Unique Challenges of Rare Diseases

Systemic sclerosis is a rare, complex, and unpredictable disease. For those living with it, the impact extends far beyond physical symptoms. It affects daily life, employment, relationships, and mental health.

Because the patient population is small, every clinical trial matters—and every participant matters even more. That is why designing clinical trials that are realistic, meaningful, and patient-centered is so critical.

Bringing the Patient Voice Into Drug Development

During the roundtable discussion “Accelerating Access: Breaking Barriers to Therapies,” we discussed how patient engagement can transform the drug development process.

Drug development is complex because safety matters deeply. That is precisely why patient engagement is so important — it reduces delays caused by poorly designed trials and strengthens the case for urgency at every stage.

Patients bring insights that no dataset can provide. They understand the daily realities of fatigue, gastrointestinal complications, Raynaud’s phenomenon, lung involvement, and other challenges that define living with systemic sclerosis.

When patients are involved early in clinical trial design, outcome selection, and regulatory discussions, trials become more feasible for participants, recruitment and retention improve, the burden on patients is reduced, and endpoints reflect outcomes that truly matter in daily life.

Why Patient Experience Data Matters

Another important topic of discussion was the growing role of patient experience data (PED) and patient reported outcomes (PROs).

Many burdens of systemic sclerosis are invisible. Without direct input from patients, critical symptoms can be underestimated or overlooked. Fatigue may not be captured in traditional clinical endpoints; gastrointestinal symptoms may not be prioritized; or functional limitations may not be fully understood.

Clinical trials tell us whether a therapy works biologically. Patients tell us whether it works enough to matter.

Addressing Barriers to Clinical Trial Participation

Another important discussion focused on equity in clinical trial participation. Many patients face barriers that limit their ability to participate in research, including:

Geographic distance from major research centers
Travel costs and logistical challenges
Lack of information about available trials
Language and literacy barriers
Historical mistrust of medical research

Patient experience data can also support regulatory decisions, influence benefit–risk assessments, and strengthen the case for reimbursement and access.

To address these challenges, we must continue to explore decentralized and hybrid clinical trial models, increase collaboration between patient organizations and researchers, and ensure better communication about research opportunities.

Clinical trials should be realistically available to all patients, not just those who live near major academic centers.

Innovation Must Go Beyond Medication

While new therapies are essential, we were also reminded that medication alone is not comprehensive care.

People living with systemic sclerosis often need access to, pulmonary rehabilitation, specialized physiotherapy, nutritional care, mental health support, and multidisciplinary clinical teams. Innovation in rare diseases must include both scientific advances and improvements in supportive care.

Moving Forward Together

One of the most inspiring aspects of the event was seeing the global scleroderma community working together—patients, physicians, researchers, regulators, and industry.

Real progress happens when these groups collaborate.

When patients are involved in trial design, when patient experience informs regulatory decisions, and when equity is prioritized in research participation, we build a system that works better for everyone.

In rare diseases like systemic sclerosis, every voice matters. And the future of research will be strongest when patients are partners in progress, not observers.

Global Webinar: Advances in Scleroderma Research

Read More from the Scleroderma Community

2026 Pre-Doctoral Summer Fellowship Awardees

Audrey Galimba, PhD (c)

Chen-Yu Wang, PhD (c)

Chu Long, PhD (c)

Read More from the Scleroderma Community

The Foundation’s Role

Read More from the Scleroderma Community

2026 Grant Award Recipients

Gulsen Ozen, MD

Daniel Batlle, MD

Matthew Dapas, PhD

Eliza Tsou, PhD

Rachel Knipe, MD

Kaveh Ardalan, MD, MS

Samuel Good, MD