"Scleroderma Research, Advocacy and Federal Legislation"
Executive Director - Scleroderma Foundation Tri-State Chapter
Patient Education Forum - HSS
About Advocacy and How You Can Help Scleroderma Research:
Bruce Cowan, Executive Director of the Scleroderma Foundation's Tri-State Chapter discusses legislation that has been introduced both in the House of Representatives and the Senate.
These bills will establish a National Commission on Fibrotic Diseases within the National Institutes of Health (NIH) to evaluate and make recommendations regarding improvements to the coordination and advancement of NIH-supported research activities related to fibrosis and fibrotic diseases which may include scleroderma as a prototypical condition that can cause fibrosis in various organs.
Question: "What does this mean to ME - the patient?"
Answer: Fibrosis is the "thickening and scarring of tissue and organs" and is a potentially lethal aspect of scleroderma (for example - Pulmonary Fibrosis). Government supported research could be a major step in better treatments and ultimately a cure.
To support both bills, there are forms on the Scleroderma Foundation's website that may be downloaded, printed, and completed, and either scanned/emailed to the Scleroderma Foundation, or mailed via the US Post Office:
To Download House and Senate Forms:
The information presented on this site is intended for educational purposes only. Neither the featured speakers, nor the Scleroderma Foundation, nor Starlight Productions ( the producers of these videos) suggest, recommend or endorse any specific treatment for any individual. Patients are advised consult their own health
care providers for treatment options.
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