|International Scleroderma Network
Irish Raynaud's & Scleroderma Society
Juvenile Scleroderma by Dr. Lehman
|Psychosocial Aspects of SSc
Pulmonary Hypertension Registry
The Rombergs Connection
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.
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.
Webmaster is Sheila Miley, emails answered weekdays or as schedule permits.
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
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.
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 (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.
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.