Sending Office: Honorable Peter T. King
Please join us in enhancing federal research activities for scleroderma and fibrotic diseases. Scleroderma is a chronic connective tissue disease affecting approximately 300,000 Americans with no known cause or cure.
The word “scleroderma” means hardening of the skin, which is one of the most visible manifestations of the condition. The cause of this progressive and potentially-fatal disease remains unknown, there is no cure, and treatment options are limited. Symptoms
vary greatly and are dependent on the organ systems it impacts. Prompt diagnosis and treatment by a qualified physician may improve health outcomes and lessen the likelihood of irreversible damage. Serious complications of the disease can include pain, skin
ulcers, anemia, and pulmonary hypertension. Scleroderma may also be a prototypical condition that can cause fibrosis in various organs.
Fibrosis is the formation of excess fibrous connective tissue in an organ. Examples include liver cirrhosis, pulmonary fibrosis, cystic fibrosis and cardio fibrosis. Currently, research is limited to respective institutes, such as the National Heart, Lung
and Blood Institute for pulmonary and cardio fibrosis and the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) for cystic fibrosis and liver cirrhosis. These fibrosis-oriented institutes should have a platform to work together and use
their resources effectively for quality research.
This is why we are introducing the National Commission on Scleroderma and Fibrotic Diseases Act of 2017. This bill would establish, at no additional cost to the federal government, a National Commission on Fibrotic Diseases within the National Institutes
of Health (NIH). This commission would:
- Evaluate and make recommendations regarding improvements to the coordination and advancement of NIH-supported research activities related to fibrosis and fibrotic diseases;
- Study the incidence, duration, and mortality rates of fibrotic diseases;
- Evaluate facilities and resources for the diagnosis, prevision and treatment of fibrotic diseases; and
- Develop a long-range plan for the use and organization of national resources to effectively advance research on fibrotic diseases.
To cosponsor this important piece of legislation, please contact Ryan Woodward with Congressman Peter King at
Ryan.Woodward@mail.house.gov or Catherine Rowland with Congressman Eliot Engel at
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