Scleroderma Sites to Surf!
The Scleroderma Webmaster's Association is a free service of the nonprofit International Scleroderma Network. We all work together to make it easy to find scleroderma resources worldwide!
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Scleroderma Meets Sjögren's
Scleroderma Society U.K.
Scleroderma (Systemic Sclerosis)
SCOT Clinical Trial
SD World
Sjögren's Syndrome
Scleroderma and Life Insurance by Steven H. Kobrin, LUTCF

Scleroderma and Life Insurance. Scleroderma is an interesting condition to underwrite for life insurance. Individuals (including small business owners) must work closely with their life insurance broker to ensure the best life quote possible, given their particular sceroderma symptoms.

Webmaster is Debby Kobrin, who also serves as office manager for Steven Kobrin, LUTCF, an independent life insurance broker, specializing in coverage for high risk clients.

Scleroderma FAQ by Ed Harris

The Scleroderma FAQ is a comprehensive document about Scleroderma targeted at patients and family members. Major topics include: General Description, Differential Diagnosis, Affected Population, Causes, Symptoms, Therapies: Standard, Therapies: Investigational/Alternative Resources.

Webmaster is Ed Harris, a CREST patient living in Madison Wisconsin. Major updates are done every two years with minor updates as needed. Email is welcomed and is usually responded to within 1-2 days.

Scleroderma Friends and Family by Diane G.

This is a free Yahoo support club for friends and family of people with Scleroderma. There is a message board, chat room, photo gallery, and links page.

Webmaster is Diane G. (aka blue-eyes-1012), who's mother has had Scleroderma for 15 years. Emails answered daily, or as schedule permits.

SCLERO.ORG by International Scleroderma Network

With 2200+ pages available in 22 languages, SCLERO.ORG (formerly known as Scleroderma from A to Z), is a major worldwide resource. Popular sections include scleroderma medical information, a terrific patient and caregiver story collection, plus worldwide support group listings. We offer to make and post free home pages and special event listings for any scleroderma support group in the world.

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

Scleroderma Family Registry and DNA Repository by 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: nlubin@sbcglobal.net

Scleroderma Society of the U.K. by Kim Fligelstone

The Scleroderma Society in London, England, is a voluntary group founded in 1982. Our site has a section of articles that include: About Scleroderma, Scleroderma, is it just tight skin?, Kidney Involvment, Free Radicals, and Oxidative Stress and Scleroderma.

Trustee and Chair of the Scleroderma Society is Kim Fligelstone.

Scleroderma (Systemic Sclerosis) by Dr. Debabrata Bandyopadhyay

Scleroderma (Systemic Sclerosis) offers comprehensive information on scleroderma primarily meant for medical students and health care professionals as well as educated lay people.

Webmaster is Dr. Debabrata Bandyopadhyay, who is Associate Professor of Dermatology and Head of Dept. of Dermatology at R.G. Kar Medical College and Hospitals in Calcutta, India. Dr. Bandyopadhyay is interested in scleroderma both as an educator and caregiver. This website is updated regularly and emails are answered promptly.

SCOT: Cyclophosphamide or Transplantation by Amy Anderson

SCOT: Cyclophosphamide or Transplantation is a clinical research study designed for people with severe forms of scleroderma. These 2 approaches are investigational, which means that they are still being tested in research studies and are not approved by the U.S. Food and Drug Administration (FDA) for the treatment of scleroderma. SCOT is being sponsored by the National Institutes of Health (NIH) through its Division of Allergy, Immunology and Transplantation (DAIT) in the National Institute of Allergy and Infectious Diseases (NIAID). Study dates 2006-2009.

Webmaster is Amy Anderson, Duke Clinical Research Institute. Contact the study staff at 866-909-SCOT or Email contact@sclerodermatrial.org.

SD World by Judy Tarro

SD World is a site 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. Site services include SD World Email List. Also see their growing pages of informational and fun links.

Webmaster is Judy Tarro, a 40+ year Scleroderma survivor. Site is updated when necessary and emails are answered as received, or as health permits.

Sjögren's Syndrome by Lynne Messina

Lynne explains that many people with Scleroderma also suffer from Sjögren's, with symptoms such as  dry eyes, dry mouth and aching joints. Sjögren's can also affect the skin, the digestive tract, ears, nasal passages and vagina. Site includes practical tips for dealing with Sjögren's.

Webmaster is Lynne Messina, a CREST and Sjögren's Patient. Site updated regularly, and emails answered daily or as health permits.

Thanks to Judy Tarro!
SD World Email ListSpecial thanks to Judy Tarro of SD World for SWA site design assistance.
Keep on Surfing!
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Email: isn@sclero.org or
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International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
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