Web Site Descriptions I-R

The International Scleroderma Network's dynamic team of volunteers empower our worldwide scleroderma community by providing medical, support and public awareness information via our SCLERO.ORG website and print publications in many languages. We offer free web pages, website listings, and special events promotion for scleroderma organizations in all countries and languages, and we are home to the Scleroderma Webmaster's Association.

Webmaster is Shelley Ensz, who is Founder and President of the nonprofit International Scleroderma Network, the SCLERO.ORG website, the Scleroderma Webmaster's Association, and EdinaWebDesign.com. Emails answered daily, or as health permits.

The Irish Raynaud's & Scleroderma Society features a FAQ sheet on Raynaud's and on Scleroderma along with a special events calendar for their support groups.

Webmaster is Sheila Miley, emails answered weekdays or as schedule permits.

Kirstin was the third person in the United States to receive a stem cell transplant as treatment for Diffuse Scleroderma. In I Survived Scleroderma she relates her personal experience with having Scleroderma and about the treatment she's received for it.

Webmaster is Kirstin Wallin, a scleroderma patient who is on the board of the Seattle chapter of the SF. Kirstin is willing to answer any questions as well as she is able.

Juvenile Scleroderma features information on medical information, experts, book, and a listing of resources.

Webmaster is Shelley Ensz, a patient, who is founder and president of the International Scleroderma Network, SCLERO.ORG, and the Scleroderma Webmaster's Association. This page updated monthly and emails answered daily, or as health permits.

My name is Marion and I developed the Mare's Home Page to make people aware of a rare form of arthritis called scleroderma. It is also about our support group in Winnipeg, Manitoba.

Webmaster is Marion Pacy, a scleroderma patient. Her email address is scleroderma@simplyconnected.ca

Project PASS: Psychosocial Aspects of Systemic Sclerosis concerns research under the direction of Dr. Vanessa Malcarne, Associate Professor in the department of Psychology at San Diego State University. The goals of Project PASS are to develop a psychosocial profile of individuals with systemic sclerosis, and their spouses as well to identify important medical and psychosocial predictors of both disability and psychosocial adjustment.

Webmaster is Dr. Vanessa Malcarne who is Professor of the Department of Psychology at San Diego State University. Emails answered weekdays, or as schedule permits.

Pulmonary Hypertension Registry of Scleroderma (PHAROS) is a multicenter study of systemic scleroderma (systemic sclerosis) patients in the United States who are at high risk for developing pulmonary hypertension as well as those with newly diagnosed with pulmonary hypertension, by members of the Scleroderma Clinical Trial Consortium (SCTC). ISN.

The Rombergs Connection is an international support group for people whose lives are affected by Rombergs Syndrome, sometimes known as Localized Scleroderma.

Webmaster is Marilyn Neal. Site is updated as changes are required. Personal stories & photos being added constantly. Emails are always welcomed.

Roseewriter is the website for author Judith R. Thompson, where she showcases her books and other writing projects that she is involved in, particularly The Voices of Scleroderma book series for the International Scleroderma Network (ISN).

Webmaster is Judith Devlin who is a CREST/scleroderma patient and author. She serves as Chair of the Archivist Committee for the International Scleroderma Network, a nonprofit agency.