Resources

Organization Website
Scleroderma Foundation www.scleroderma.org
Scleroderma Foundation missions:

  • Support: To help patients and their families cope with scleroderma through mutual support programs, peer counseling, physician referrals and educational information.
  • Education: To promote public awareness and education through patient and health professional seminars, literature and publicity campaigns.
  • Research: To stimulate and support research to improve treatment and ultimately find the cause of and cure for scleroderma and related diseases.The Scleroderma Foundation website maintains current lists of US-based patient support groups and Scleroderma research and treatment centers.
Scleroderma Foundation Support Community www.inspire.com/groups/scleroderma-foundation/
The Scleroderma Foundation Support Community connects patients, families, friends and caregivers for support and inspiration. This community is sponsored by the Scleroderma Foundation, an Inspire trusted partner.
Scleroderma Research Foundation www.srfcure.org
The Scleroderma Research Foundation (SRF) was established in 1987 by patient turned activist Sharon Monsky, when research on this potentially life threatening illness was nearly nonexistent. Since our founding, we’ve stood firm in our belief that the best way to help scleroderma patients is to fund medical research aimed at improved therapies and a cure. Today, we are the nation’s largest nonprofit investor in scleroderma research.
The Arthritis Foundation www.arthritis.org
The Arthritis Foundation is committed to raising awareness and reducing the unacceptable impact of arthritis, a disease which must be taken as seriously as other chronic diseases because of its devastating consequences.We are leading the way to conquer the nation’s leading cause of disability through increased education, outreach, research, advocacy and other vital programs and services.
Scleroderma Clinical Trials Consortium www.sctc-online.org
The Scleroderma Clinical Trials Consortium (SCTC) is a charitable non-profit organization dedicated to finding better treatment for scleroderma. Member institutions of the SCTC conduct clinical treatment trials of new (and sometimes old) medications that appear promising for the treatment of scleroderma.
National Organization for Rare Disorders (NORD) www.rarediseases.org/
The National Organization for Rare Disorders (NORD), a 501(c)(3) organization, is a unique federation of voluntary health organizations dedicated to helping people with rare “orphan” diseases and assisting the organizations that serve them. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and service.
The Road Back Foundation www.roadback.org
The Road Back Foundation provides information about and advocacy for antibiotic treatment for rheumatic diseases.
International Scleroderma Network www.sclero.org
We are a full-service nonprofit 501(c)(3) providing stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension.
Juvenile Scleroderma Network www.jsdn.org
Our mission is to provide emotional support and educational information to parents and their children living with juvenile scleroderma; to support pediatric research to identify the cause and the cure for juvenile scleroderma; to enhance the public’s awareness of juvenile scleroderma and related diseases.
Johns Hopkins Scleroderma Center www.hopkinsscleroderma.org
The Johns Hopkins Scleroderma Center specializes in the care of patients with scleroderma and related conditions such as Raynaud’s phenomenon, localized scleroderma, scleromyxedema, scleredema, and eosinophilic fasciitis, among others. The mission of The Johns Hopkins Scleroderma Center is to provide excellent clinical care while seeking to better understand the causes and best treatment approaches for scleroderma.
Rudy’s Ruminations on Rheumatology (Book) Amazon.com
Many patients with systemic scleroderma have author autoimmune diseases or have family members with other autoimmune diseases such as rheumatoid arthritis, Sjoegren’s, osteoarthritis, Hashimoto’s, etc. This recently published book by a practicing rheumatologist is an excellent resource for people that want to learn about other diseases that are treated by rheumatologists. While the book is targeted mostly at medical students, residents, and primary care physicians, it is very clearly written and can easily be understood by most patients. It is available at Amazon for a very reasonable price (including a Kindle edition) and you can see previews of many parts of the book to decide if this is a good resource for you.