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Old Thu Jul 21, 2011, 07:52 PM
triumphe64 triumphe64 is offline
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Join Date: Feb 2008
Location: Dallas, Texas
Posts: 440
Support H.R. 640

Representative Doris O. Matsui (D-CA) formally introduced the “Bone Marrow Failure Disease Research and Treatment Act” (H.R. 640). This legislation would bring together the resources of several federal agencies to advance our understanding of, and treatments for, aplastic anemia, myelodysplastic syndromes (MDS), and paroxysmal noctural hemoglobinuria (PNH).

Go to

http://www.aamds.org/

The "Get Involved" section at the upper right will lead you to information about this bill and how you can write your Representative and get their support as a cosponsor of this bill. The bill is asking for.

A national bone marrow failure disease registry so that researchers can combine their data in one place, yielding more effective research designs and better results;
Pilot studies through the Agency for Toxic Substances and Disease Registry to determine which environmental factors cause people to acquire bone marrow failure diseases;
Minority-focused programs to make information on treatment options and clinical trials available to minority communities, particularly Hispanic and Asian American communities;
Agency for Healthcare Research and Quality grants to help improve diagnostic practices and quality of care for patients with bone marrow failure disease
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Dallas, Texas - Age 76 - Pure Red Cell Aplasia began March 2005 - Tried IVIG - Then cyclosporine and prednisone. Then Danazol, was added. Then only Danazol . HG reached 16.3 March 2015. Taken off all meds. Facebook PRCA group https://www.facebook.com/groups/PureRedCellAplasia/
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