Home         Forums  

Go Back   Marrowforums > Bone Marrow Failure Diseases > News and Events
Register FAQ Search Today's Posts Mark Forums Read

News and Events News related to bone marrow failure diseases

Thread Tools Search this Thread
Old Thu Jul 31, 2014, 11:26 PM
dizzydoll dizzydoll is offline
Join Date: Jul 2014
Location: Tx
Posts: 3
National Bone Marrow failure registry

Has anyone heard further information on this bill? It either died or was attached to other legislation yet I can't seem to find anything else.


Diagnosed SAA Oct 2013, HATG DEC 2013, Partial response, Relapse July 2014, stable on Cyclosporine. KEEP FIGHTING! And this same God who takes care of me will supply all your needs from his glorious riches, which have been given to us in Christ Jesus.Philippians 4:19
Reply With Quote
Old Fri Aug 1, 2014, 02:03 AM
Neil Cuadra Neil Cuadra is offline
Join Date: Jul 2006
Location: Los Angeles, California
Posts: 2,361
Here's what I know.

Grassroots lobbying brought about the Congressionally Directed Medical Research Program (CDMRP) of the Department of Defense in 1992.

In 2007, Congresswoman Doris O. Matsui led an effort to add funding for bone marrow failure disease research to that program. That effort succeeded, with $1 million in funding allocated in 2008. Since then the average annual funding has been higher, at about $2.7 million per year. It's a positive step but a "drop in the bucket" compared to funding for research related to other diseases.

From 2009 to the present, Congresswoman Matsui has introduced congressional bills to have the Dept. of Health and Human Services (HHS) establish a national bone marrow failure disease registry, perform studies, do minority outreach, and give grants for improving diagnostic practices. Last year the bill passed the House but not the Senate.

Advocates still encourage supporters to contact their congressperson and senators to express support for the bill and ask that they co-sponsor or support the bill. Your messages probably draw more attention if you explain your personal connection to the issue and why the bill has your support.
Reply With Quote

Thread Tools Search this Thread
Search this Thread:

Advanced Search

Posting Rules
You may not post new threads
You may not post replies
You may not post attachments
You may not edit your posts

vB code is On
Smilies are On
[IMG] code is On
HTML code is Off
Forum Jump

Similar Threads
Thread Thread Starter Forum Replies Last Post
Confused with Bone marrow report teo MDS 168 Mon May 5, 2014 09:20 AM
Join the Bone Marrow Registry for Free Marrowforums News and Events 0 Thu Jun 11, 2009 12:18 AM
Bone Marrow Failure Disease Research and Treatment Act Marrowforums News and Events 1 Sat Sep 13, 2008 12:20 AM
Join National Bone Marrow Registry! sandra News and Events 0 Sat Sep 6, 2008 10:46 AM

All times are GMT -4. The time now is 03:03 AM.

Powered by vBulletin® Version 3.6.7
Copyright ©2000 - 2018, Jelsoft Enterprises Ltd.
Forum sites may contain non-authoritative and unverified information.
Medical decisions should be made in consultation with qualified medical professionals.
Site contents exclusive of member posts Copyright 2006-2018 Marrowforums.org