Scleroderma Newsroom
Janey Willis, ISN News GuideHello, I am Janey Willis, ISN News Manager and ISN Asst. Webmaster. David Becker, ISN Assistant News Guide researches our Autoimmune News section. Assistant News Guides Lisa Bulman and Judy Tarro post these stories to our Sclero Forums. Stephen Dickson prepares our RSS Newsfeed.
Scleroderma Medical News
Autoimmune News
Media Stories
ISN Website News
Donations & In Memory
New Personal Stories
Scleroderma News Release
ISN/SCTC Research Fund Announced

12-7-02 for Immediate Release

The International Scleroderma Network (ISN) and the Scleroderma Clinical Trials Consortium (SCTC) have formed an alliance to create a special ISN/SCTC Research Fund for international scleroderma research.

The International Scleroderma Network is a nonprofit agency that serves people affected by scleroderma. The ISN's website at sclero.org offers 800+ pages in more than 16 languages. The ISN also publishes the Voices of Scleroderma book series.

The Scleroderma Clinical Trials Consortium (SCTC) is an international group of medical institutions interested in advancing the science and practice of therapeutic clinical trials for scleroderma. The SCTC sponsors educational and research programs in the area of clinical trials and scleroderma and fosters communication among investigators involved in scleroderma research.

The ISN/SCTC Research Fund will be funded with ten percent of all general donations to the ISN, as well as all general funds it receives that are restricted for research. It is estimated that the first year contributions will be minimal, since ISN is still in its start-up phase and has not yet fully launched its membership and fundraising programs.

As part of this agreement, the ISN Medical Advisory, led by Dr. Magdalena Dziadzio of Royal Free Hospital in London, will participate in the SCTC collaborative process for recommending research projects to the SCTC Board of Directors.

Negotiators for this collaboration were Dr. Peter Merkel of the Rheumatology Department of Boston University MedicalCenter for the SCTC, Shelley Ensz, Founder and President of the ISN, and Dr. Magdalena Dziadzio, Chair of the ISN Medical Advisory.

A presentation and announcement of this agreement was recently made by Dr. Merkel at the SCTC meeting during the American College of Rheumatology (ACR) Conference. Dr. Merkel said, "Our entire system of giving grants is maturing and this is the perfect time for this alliance. This is clearly a 'win-win' for everyone."

Dr. Dziadzio wholeheartedly agrees. "I am happy to see this alliance of the international patient and medical organizations, because it is a positive step toward supporting international research efforts for scleroderma."

Shelley Ensz adds, "Everyone who is interested in supporting the international efforts to combat scleroderma may visit the our Sclero.org website or call us toll free (in U.S. only) at 1-800-564-7099.

"Generous support of the ISN/SCTC Research Fund will herald a new wave of international research efforts to fight this dread disease. We hold firm to the belief that these efforts will eventually lead to a medical victory over scleroderma."

For further information, contact:

Shelley Ensz
www.sclero.org
International Scleroderma Network
7455 France Ave So #266
Edina, MN 55435
Toll Free (U.S. Only ): 1-800-564-7099
Direct (your expense ): 952-831-3091 (U.S.)

New Personal Stories
Donna: CREST, Raynaud's, possible Fibromyalgia I was diagnosed with CREST (Limited Systemic Scleroderma) by a rheumatologist in 2006. This wasn't really a surprise to me as my mother was diagnosed with diffuse scleroderma in 1998...
Jessica G: Parry-Romberg Syndrome By the time I was about five years old, the disease had already disfigured my left side drastically. I have had over fifty operations and surgical procedures for Romberg's....
Leslie R: Scleroderma, Vitiligo, Lupus, Anemia, Hypertension and Type 2 Diabetes He told me that I have scleroderma and explained what this disease is about. After suffering so long I finally got some answers...
More New Stories: Feb-August 2008
Submit Your Patient, Caregiver or Survivor Story in:
Arabic  | Dutch  | English  | Español  | Deutsche (German)
Italiano  | Kannada  | Polski  | Russian  | Spanish  | Turkish  | Other Languages
We will edit your story, create original artwork to decorate it, prepare it for the web, and post it on this site. Just fill out our simple Story Submission Form for your story, updates, or email address changes.
Keep on Surfing!
Go to Jazz for Peace Benefit Concert 2004
Contact ISN. We are a full-service nonprofit agency.
Email: isn@sclero.org or
or post a message in our Sclero Forums !
Shop, Join or Donate Now
(Also see: Contact ISN )
International Scleroderma Network (ISN)
7455 France Ave So #266
Edina, MN 55435-4702
USA
Toll Free Hotline in U.S. 1-800-564-7099
Direct Line 952-831-3091 (U.S.)
(We are also known as the Scleroderma from A to Z web site.)
© Copyright 1998-2008 International Scleroderma Network
All Rights Reserved