Collaboration Drives Everything We Do

The Steffens Scleroderma Foundation collaborates worldwide with researchers, clinicians, organizations, and patients to improve the lives of those affected by rare diseases.

Welcome to the Steffens Scleroderma Foundation

The Steffens Scleroderma Foundation has significantly shaped the scleroderma community by advancing education, driving research and development, inspiring students and clinicians to engage with scleroderma and Degos disease, and encouraging and empowering patients as educators.

There are many scleroderma support resources available, see below for what makes the Steffens Scleroderma Foundation stand out from the rest.

Excellence That Sets Us Apart

  • We collaborate worldwide with researchers, clinicians, organizations, and patients to drive research and empower education.

  • We support multidisciplinary education to drive innovative treatments to improve the lives of those affected by rare diseases.

  • We advance research in and out of the lab—bringing discoveries into and out of clinics, communities, households, & beyond.

  • We thrive on expert guidance and volunteer-driven passion, uniting professionals and advocates to make a meaningful impact.

  • We educate and inspire the next generation of healthcare providers, equipping them with knowledge for timely and effective care.

  • We elevate education to increase early detection and diagnosis, ensuring timely intervention and better patient outcomes.

  • We empower patients to become active educators, helping raise awareness and understanding of rare diseases worldwide.

  • We pride ourselves in advancing interprofessional education (IPE), fostering collaboration among experts to improve care.

Pathways to Education

Learn more about our interprofessional education (IPE) forum.

More to Explore

  • Want to learn more about the science? Take a deep dive into the research.

    Steffens Research

  • Are you a newly diagnosed patient looking for additional resources?

    External Resources

  • Check out our events page for upcoming events or how to get involved!

    Upcoming Events

  • We thrive on volunteer-driven passion, and we need your help!

    Volunteer Signup

The information provided on this website is designed to support, not replace, the relationship that exists between a patient/site visitor and their physician.

What is Scleroderma?

Scleroderma is a rare, chronic disease that leads to fibrosis—the hardening of the skin and connective tissue, and this disease can vary from person to person. This rare disease can also affect internal organs and happens when the immune system mistakenly attacks healthy tissues, resulting in the overproduction of collagen, a key structural protein. 

What is Degos Disease?

Degos disease, an ultra-rare disease, often shows skin lesions with a unique look—white centers surrounded by red rim. In some cases, it can spread to other organs like the stomach or brain, leading to serious complications if not treated properly and quickly. While Degos disease and scleroderma share some similarities, having scleroderma does not mean you will develop Degos disease.

Scleroderma Renal Crisis Prevention Card

If you’re at risk of scleroderma renal crisis, this renal crisis prevention card is an essential tool. Simply download, print, and fill it out with your information and your rheumatologist’s contact details.

Carry it with you at all times and present it to medical personnel if needed. It could help save valuable time—and potentially your life—in a crisis.

In Memoriam

  • Tribute to Ann Steffens

    Our foundation was named in memory of Ann Elizabeth Steffens, a scleroderma patient who had an unparalleled desire to make a difference, the foundation was made possible by a generous gift from her mother, Helen Polenz. We proudly carry on Ann’s spirit of helping others and one day hope to spare families from losing a loved one to these diseases.

  • Tribute to Lou Renna

    By Lou’s Family Member

    Read Their Story

Get in Touch

Have questions about our organization or educational programs? Get in touch—we’d love to connect!

Support Us

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