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International Scleroderma Network
Irish Raynaud's & Scleroderma Society

Juvenile Scleroderma by Dr. Lehman
Juvenile Scleroderma
Mare's Home Page
Psychosocial Aspects of SSc
Pulmonary Hypertension Registry
The Rombergs Connection

International Scleroderma Network (ISN) by Shelley Ensz

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.

Irish Raynaud's & Scleroderma Society by Sheila Miley

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.

Juvenile Scleroderma by Dr. Thomas Lehman

This site covers the various types of childhood Scleroderma, and possible complications. Also see his pages on  Arthritis in Childhood and Adolescence Diets & Shark Cartilege, Etc., and his book section. Webmaster is Dr. Thomas J. A. Lehman, who is Chief of the Division of Pediatric Rheumatology at the Hospital for Special Surgery, and Professor of Clinical Pediatrics at Sanford Weill Cornell Medical Center in New York, and author of more than 30 peer reviewed publications in pediatric rheumatology, and a recognized expert in the rheumatic diseases of childhood. Please note that it isn't possible for Dr. Lehman to provide individual medical advice over the internet. Emails answered as schedule permits.

Juvenile Scleroderma by ISN

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.

Mare's Home Page by Marion Pacy

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

Psychosocial Aspects of Systemic Sclerosis by Dr. Vanessa Malcarne

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.

Pulmonary Hypertension Registry of Scleroderma by SCTC

pharosPulmonary 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 by Marilyn Neal

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.

 
Go to Website Descriptions - S-Z
About the ISN

This website is certified by Health On the Net Foundation. Click to verify.We are a full-service nonprofit 501(c)(3) providing stellar worldwide research, support, education and awareness for scleroderma and related illnesses, such as pulmonary hypertension. This site complies with the HONcode standard for trustworthy health information: verify here.

 

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