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Old Mon Feb 21, 2011, 09:19 PM
Marrowforums Marrowforums is offline
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Rep. Matsui Re-introduces BMFD Research and Treatment Act (HR 640)

The Bone Marrow Failure Disease Research and Treatment Act was re-introduced by Representative Doris Matsui [D-CA] on February 10, 2011.

Now known as HR 640, this bill is very similar to HR 1230 that was approved by the House of Representatives but not the Senate last year. Representative Matsui, whose husband Representative Bob Matsui died of MDS in 2005, has spearheaded the effort to get this legislation signed into law.

HR 640 seeks to increase the government's commitment to researching and treating aplastic anemia, MDS, PNH, and other acquired bone marrow failure diseases by directing the U.S. Department of Health and Human Services (HHS) to combat these diseases through a strategy that includes:
  • 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 diseases.
If you live in the U.S., you can help by contacting your representative. Go to the Grassroots Action Center and click the Take Action button. Personalize the sample message to tell your story and why you want your Representative to support HR 640.
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Old Tue Feb 22, 2011, 07:56 AM
Susan L Susan L is offline
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Bone Marrow failure research

I have joined the grassroots action center and urge all of us to do as much as we can to promote the research of this disease. We need all the help that we can and have to spearhead this movement. I myself - without the help of the NIH research (and many more of us here) would not be around today if it was not for active reseach. I have relapsed - but it was 7 1/2 yrs that I would not have had. Please click the button on the email - it is easy to do.
__________________
Susan Patient, 58, MDS, UPDATED 9/13
Now have RAEB-2, Firbrosis 3+, blasts 18% peripheral, 10 - 14% blasts marrow, chromosomes now T 1:21, trisonomy 16 and 1.- Match found ---10/10 -couldn't believe when I heard - Tentative day is 1/09th!!!! Admit date changed to 11/12. WOW -
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