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Web Site Descriptions S-Z

Scleroderma FAQ
Scleroderma Friends & Family
Scleroderma from A to Z
Scleroderma Family Registry
Scleroderma Meets Sjögren's
SCOT Clinical Trial
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.

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 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 and EdinaWebDesign.com. 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]

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).

Webmaster is Amy Anderson, Duke Clinical Research Institute. Contact the study staff at 866-909-SCOT or 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)

Go to Support Groups: Foreign
 

Shelley Ensz in Memory of Patricia Ann Black
Diana Kramer is reading Voices of Scleroderma book series!
Keith and Rosalyn Miller in Memory of Patricia Ann Black
Brenda Miller is Raising Awareness!
Susan Moore in Memory of Louise Beeler
Daniel and Joann Pepper in Memory of Gayle Hedlin
Vickie Risner is Raising Scleroderma Awareness!
Nancy Smithberg in Memory of Gayle Hedlin
David and Carleen Waterman in Memory of Gene Wilkinson
United Way of Central New Mexico
United Way of Snohomish County
Donate Now

 

SCLERO.ORG is the world leader for trustworthy research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. We are a service of the nonprofit International Scleroderma Network (ISN), which is a 501(c)(3) U.S.-based public charitable foundation, established in 2002. Meet Our Team, Volunteer, or Donate.

International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702 USA

Email [email protected] to request our Welcome email, or to report bad links or to update this page content.

Toll Free US/Canada Scleroderma and Pulmonary Arterial Hypertension Hotline: 800-564-7099.
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The most important thing in the world to know about scleroderma is sclero.org!
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.
Copyright 1998-2016, International Scleroderma Network. AKA Scleroderma from A to Z and SCLERO.ORG. All Rights Reserved.