Scleroderma Friends & Family
Scleroderma from A to Z
Scleroderma Family Registry
|Scleroderma Meets Sjögren's
SCOT Clinical Trial
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 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.
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: [email protected]
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 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)
Reading Voices of Scleroderma Books: Diana Kramer.
Sharing Scleroderma Awareness Bracelets: Deb Martin, Brenda Miller, Vickie Risner.
Thanks to UNITED WAY donors of Central New Mexico and Snohomish County!
Patricia Ann Black: Marilyn Currier, Shelley Ensz, Richard Howitt, Gerald and Pat Ivanejko, Juno Beach Condo Association, Keith and Rosalyn Miller, and Elaine Wible.
Gayle Hedlin: Daniel and Joann Pepper and Nancy Smithberg.
Janet Paulmenn: Anonymous, Shelley Blaser, Susan Book, Dennis and Pat Clayton, Grace Cunha, Cindy Dorio, Shelley Ensz, Nancy Falkenhagen, Jo Frowde, Margaret Hollywood, Karen Khalaf and Family, Susan Kvarantan, Bradley Lawrence, Jillyan Little, Michele Maxson, John Moffett, Joan-Marie Permison, John Roberts, Margaret Roof, and Maryellen Ryan.
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, or Volunteer. Donations may also be mailed to:
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.