April 1998 — April 2015
A step back in time! First meeting of the SWA in 1999.
The Scleroderma Webmaster's Association (SWA) encouraged the worldwide development and recognition of high-quality medical information and support resources for scleroderma.
It was founded by Shelley Ensz, and operated by the non profit International Scleroderma Network from 2002 to 2015.
Now that ample quality resources for scleroderma are available, we have switched to simply linking to such sites within sclero.org.
Original SWA member sites that are still in existence remain listed here, in everlasting gratitude for their service to us all.
|Scleroderma and Life Insurance
Scleroderma Friends & Family
Scleroderma from A to Z
Scleroderma Family Registry
Scleroderma Meets Sjögren's
|Scleroderma (Systemic Sclerosis)
SCOT Clinical Trial
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.
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.
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.
With 2200+ pages available in 23 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.
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 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: firstname.lastname@example.org
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 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 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).
Webmaster is Amy Anderson, Duke Clinical Research Institute. Contact the study staff at 866-909-SCOT or Email email@example.com.
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)
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.
SCLERO.ORG is the world's leading portal for reliable scleroderma information and support. It is a program of the International Scleroderma Network (ISN). The ISN is a 501(c)(3) public charitable foundation providing stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. ISN Team Profiles and Volunteer Info.
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA
Ask for our Welcoming Email!
Toll Free US/Canada Scleroderma Hotline