7 Scleroderma Foundations and Organizations Patients Should Know About

Patrícia Silva, PhD avatar

by Patrícia Silva, PhD |

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Scleroderma is normally classified as an autoimmune rheumatic disease. According to scleroderma.org, the name of the disease itself comes from the Greek language: sclero meaning “hard” and “derma” meaning skin. Together, they describe one of the most visible symptoms of the disease: the hardening of the skin.

Scleroderma is a chronic connective tissue disease that can be very serious. Scleroderma is not, however, infectious, cancerous or malignant.

MORE: Scleroderma treatment: chemotherapy isn’t just for cancer

Scleroderma Foundation
This national nonprofit organization aims to raise money for support, education and research into scleroderma. The foundation has 160 groups across the U.S., offering support to patients and their families, aiming to raise awareness and understanding of the disease and funding research into treatment with the hopes of ultimately finding a cure.

Scleroderma Research Foundation
This foundation was established in 1987, at a time when research into scleroderma was minimal. Since then, the foundation has grown to become the largest scleroderma research foundation in America, using funds to promote research in some of the best universities, including Dartmouth, Harvard, Johns Hopkins, Royal Free and University College in the U.K., Stanford University, Northwestern, Boston University, the University of Michigan, the University of Washington and others.

The World Scleroderma Foundation
This non-profit, non-governmental foundation research organization is based in Switzerland and is dedicated to worldwide scleroderma research, both independently and in collaboration with other organizations. Its main goal is to improve the lives of scleroderma patients all over the world.

Scleroderma Aware
A joint initiative between the Scleroderma Foundation, Scleroderma Canada and the Scleroderma Research Foundation, this organization works tirelessly to raise awareness of the disease worldwide.

Scleroderma & Raynaud’s UK (SRUK)
The only U.K. organization dedicated to scleroderma, Scleroderma & Raynaud’s UK works with local politicians to try and push scleroderma to the top of the health care agenda, in order to raise awareness, support those affected and find a cure.

Scleroderma Association of B.C.
With the newly launched site, the association aims to offer helpful current Canadian, medically-reviewed information on localized scleroderma. Founded in 1984, the association now offers help to about 450 patients and their families and works continuously to raise awareness, support sufferers and their families, and to promote patient outreach, support and education.

The Scleroderma Patient-centered Intervention Network (SPIN)
This worldwide network of researchers, health care providers, and patients is a research project aiming to develop, adapt and test programs to help improve the daily lives of those suffering from scleroderma.

MORE: Four tips for caring for someone with scleroderma

Scleroderma News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or another qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website.