Living with Scleroderma

Many patients hear the word “scleroderma” for the first time when they are diagnosed.

It is normal to have many questions. Whether you have been newly diagnosed or have lived with scleroderma for many years, we hope to help you learn about scleroderma, understand how it is diagnosed, and find ways to treat it.

The Scleroderma Research Foundation is committed to providing the information the scleroderma community needs. We think the best thing we can do for you is to find a cure. While that may not happen immediately, our research is entirely focused on advancing toward a cure and improving treatments along the way.

About our Research

The SRF’s research leadership actively seeks and recruits experts from the fields of rheumatology, immunology, genetics, and fibrosis, as well as experts in leading-edge technologies, to join the scleroderma research community. The SRF funds a diverse portfolio of projects focused on moving scleroderma research forward.

Get More Details

Participate in Scleroderma Research

Scleroderma is a very complicated disease that progresses and changes over time and varies greatly from person to person. You can help advance research by participating in studies. The more details we can understand about how scleroderma affects people in different ways, the closer we can come to finding the root cause.

GRASP Project

GRASP stands for Genome Research in African-American Scleroderma Patients. Participation can help tailor treatments for African Americans and ultimately will have an impact for patients of other racial backgrounds.

Read About the GRASP Study

23andMe

People living with scleroderma can participate in this Systemic Sclerosis Research Study by 23andMe. It could change our understanding of this disease and bring us closer to future treatment discoveries.

Learn More

CONQUER Registry

CONQUER is a registry that collects data about scleroderma patients to track and analyze the health status, disease complications, treatments, and outcomes of numerous patients over many years.

Learn More

Scleroderma Resources

In this section, you can explore information on what scleroderma is, how it is diagnosed, and how it can be treated. Learn about associated conditions like Raynaud’s phenomenon, pulmonary arterial hypertension (PAH), skin ulcers, or joint stiffness.

I’ve Been Diagnosed, What Do I Do?

There is a lot to understand about this complicated disease. Here is a place to get started.

Learn More

Complications and Treatments

There are various complications and conditions associated with scleroderma.

Learn About Treatments

Treatment Centers

Patients who are diagnosed with scleroderma are encouraged to receive care at a specialized Treatment Center.

View Treatment Centers

Webinar Series

Scleroderma Research Foundation collaborates and co-hosts free online webinars providing scleroderma health, wellbeing, and COVID-19 information.

See Available Webinars
MAKE A DIFFERENCE

Join the Cure Crew!

The Cure Crew is a grassroots volunteer program with the goal of raising funds and awareness for scleroderma research. You can make a difference to the thousands of people living with scleroderma.

Join the Cure Crew

Stories from People with Scleroderma

Liz

After more than 20 years managing this disease, Liz has a lot of perspective on living with scleroderma.

Read Their Story

Ile

“Fight like hell.” This is how Ile views living with scleroderma.

Read Their Story

Sunny

“I don’t believe scleroderma is a life sentence. It’s a life.”

Read Their Story