Web Site Descriptions S-Z

Scleroderma FAQ
Scleroderma from A to Z
Scleroderma Family Registry
Scleroderma Meets Sjögren's
SD World

Scleroderma FAQ by Ed Harris

The Scleroderma FAQ is an educational website that covers scleroderma diagnosis and treatment. There are also supplemental technical articles on ANA and Antibody Testing and Scleroderma-related Blood Hyperviscosity research and treatments.

Webmaster is Ed Harris, a CREST patient living in Madison Wisconsin. Major updates are done every two years (the latest in 2014) with minor updates as needed.

SCLERO.ORG by International Scleroderma Network

With thousands of pages available in 23 languages, SCLERO.ORG is the world leader in this field and a highly respected source for trustworthy medical information and support. Popular sections include scleroderma medical information, a terrific patient and caregiver story collection, plus worldwide support group listings.

ISN President is Shelley Ensz, who is also Founder and President the Scleroderma Webmaster's Association. Site updated and emails answered daily.

Scleroderma Family Registry and DNA Repositoryby Dr. Maureen Mayes on ISN

Scleroderma Family Registry and DNA Repository Patients in the United States and Canada are encouraged to register. This registry will help to identify clusters in certain areas or families, track the prevalence of scleroderma, and serve as a resource for scleroderma researchers. Enrollees may also be contacted to participate in clinical trials.

Dr. Maureen D. Mayes is Principal Investigator of the Scleroderma Family Registry, and author of The Scleroderma Book, A Guide for Patients and Families. This page is hosted on the ISN's SCLERO.ORG web site.

Scleroderma Meets Sjögren's by Natasha Lubin

Scleroderma Meets Sjögren's is a personal page by Natasha Lubin, a longtime Sjögren's and Scleroderma patient. It beautifully tells the story of mainly how Sjögren's has affected her.

Webmaster is Natasha Lubin, a Sjögren's and Scleroderma patient. Email: [email protected]

SD World in memory of Judy Tarro

SD World is a site that was dedicated to providing a place where those who suffer from Scleroderma and other autoimmune problems may gather in a warm, friendly forum for an upbeat, open and free exchange of thoughts, ideas and information.

Founder and Webmaster was Judy Tarro, who was a fifty-plus year systemic scleroderma survivor. The site is now operated in her memory, as she passed away in May 2009. (Also see ISN: Judy Tarro)

Current Webmaster is Jo Frowde. In 2016 and 2017, Jo entirely re-coded and renewed the SD World web site, to keep it fresh and lively. (Also see ISN: Jo Frowde)

Go to Support Groups: Foreign

SCLERO.ORG is the world's leading nonprofit for trustworthy research, support, education and awareness for scleroderma and related illnesses. We are a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team. Donations may also be mailed to:

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Email [email protected]. Disclaimer. Privacy Policy.