External Resources

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.

Scleroderma Specific Resources

  • EUropean Scleroderma Trials And Research group (EUSTAR)

    Advances scleroderma research through global clinical collaboration.

  • Friends of World Scleroderma Foundation

    Supports and promotes the global efforts of the World Scleroderma Foundation.

  • Johns Hopkins Scleroderma Center

    Provides expert care and advances research for scleroderma.

  • National Institute of Arthritis and Musculoskeletal and Skin Diseases

    Advances research on arthritis, musculoskeletal, and skin diseases.

  • National Organization for Rare Disorders (Scleroderma page)

    Provides support, education, and resources for patients.

  • National Scleroderma Foundation

    Supports research, education, and patient resources for scleroderma.

  • Project Scleroderma

    Raises awareness and supports research through advocacy efforts.

  • Scleroderma Clinical Trails Consortium

    Facilitates research to improve scleroderma treatments and care.

  • Scleroderma Foundation Greater Chicago

    Supports research, education, and patient resources in and near Chicago.

  • Scleroderma Foundation Greater Washington DC

    Provides support, education, and advocacy for the DC area.

  • Scleroderma Foundation Southern California Chapter

    Supports education, research, and patient services in California.

  • Scleroderma Patient-centered Intervention Network (SPIN)

    Develops tools and resources to improve quality of life for patients.

  • Scleroderma Research Foundation

    Funds research and works toward a cure for scleroderma.

  • Scleroderma Society of Ontario

    Provides support and advocacy for people in and near Ontario.

  • Scleroderma United

    Connects and empowers the global scleroderma community.

  • World Scleroderma Foundation

    Promotes global collaboration in scleroderma research, education, and patient care.

Invisible: A Nurse-Turned-Patient’s Resource to Living Well with Autoimmune Disease

This book, written by our board member Melissa Marquis, shares her journey from nurse to patient, offering insight and guidance on living well with autoimmune disease.

Mogil’s Mobcast:
A Scleroderma Chat Podcast

This podcast is dedicated to those living with scleroderma, their friends and family, featuring guests from around the world across various disciplines.

The Scleroderma Book:
A Guide for Patients
and Families

This book, written by Maureen D. Mayes, offers an expert yet compassionate guide for patients and families, providing information on managing life with scleroderma.

Other Relevant Resources

  • Degos Disease Foundation

    Learn more about Degos disease, an ultra-rare disease similar to scleroderma.

  • MedlinePlus

    Provides reliable health information from the National Library of Medicine.

  • National Institutes of Health (NIH)

    Conducts research and supports health advancements worldwide.

  • National Organization for Rare Disorders (Degos Disease page)

    Provides support, education, and resources for Degos disease.

  • OMERACT Outcome Measures in Rheumatology

    Improves outcomes by advancing clinical research in autoimmune and musculoskeletal diseases.

  • Orphanet

    Provides rare disease information and resources for patients and professionals.

  • Pulmonary Fibrosis Foundation

    Supports research, education, and advocacy for pulmonary fibrosis.

  • Pulmonary Hypertension Association

    Provides support, education, and research for pulmonary hypertension.

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