| Web
Site Descriptions I-R |
|
| In
Memory of Mom by
Raymound Girouard |
In
Memory of Mom I made this web page in memory of my
mother, who I lost to scleroderma on October 31, 2002.
In my site I talk a little about her illness on the first
page. On the second page I have pictures of my mother during
the different stages of the illness. My third page is about
scleroderma. I plan on making a fourth page mainly on research.
My goal is to show the people how little the U.S. and Canadian
governments are helping on the research of scleroderma.
Webmaster is Raymond Girouard. I sell cars
for a living. My mother died of scleroderma and her brother
was just told he also has scleroderma. I am scared for myself
and even my children, not knowing anything about scleroderma,
we really do not know what we are in for. During my mom's
battle the doctors could not tell us a thing about scleroderma.
We had to find out from all the wonderful sites online. I
feel now is my turn to tell my mom's story and if I can help
one person or even make one person speak out to the governments
on funding, I'll be happy. Emails answered
regularly. |
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
Scleroderma from A to Z 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 Scleroderma
from A to Z 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. |
I
Survived Scleroderma by
Kirstin Wallin |
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 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 Scleroderma from A to Z |
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, Scleroderma from A to
Z, 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. Emails answered
weekdays, or as schedule permits. |
| Pulmonary Hypertension
Registry of Scleroderma by SCTC |
 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). SD
A-Z.
|
The
Rombergs Connection by
Theresa Hildebrand |
The
Rombergs Connection is
an international support group for people whose lives
are affected by Rombergs Syndrome, sometimes known as
Localized Scleroderma.
Webmaster is Theresa Hildebrand. Site is updated
as changes are required. Personal stories & photos being
added constantly. Emails are
always welcomed. |
Roseewriter by
Judith R. Thompson |
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. |
