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.
Stay Connected
Sign up for our quarterly email newsletter to be delivered directly to your inbox today!
Our Research
Want to learn more about the science? Take a deep dive into the research.