Thursday, May 21, 2015

Update on 21st Century Cures Legislation

This is another important bill that everyone living with a rare disorder (including Kennedy's Disease) needs to follow.

NORD Issues Statement on Today’s Approval
 of the 21st Century Cures Initiative
Washington, D.C. – May 21, 2015The following statement was issued by
Peter L. Saltonstall, President and CEO of NORD, on the approval by the
House Energy and Commerce Committee of the 21st Century Cures legislative
initiative and the introduction of the OPEN Act in the United States Senate. 
NORD congratulates the House Energy and Commerce Committee for 
unanimously approving the 21st Century Cures initiative.  As Chairman Fred 
Upton (R-MI) said, “This historic day marks a big bipartisan step toward our 
path to cures.”  Today also marks the introduction in the Senate of the OPEN 
Act, a bill that aims to greater incentivize orphan product development.
We look forward to working with the House as it considers the bill approved  
today by the Committee, and with the Senate as it continues its Medical 
Innovation Initiative and considers the OPEN Act.
The bill approved today contains provisions that are critically important for the 
rare disease community. It also puts the patient at the center of drug approval, 
strengthens the FDA’s ability to streamline clinical trials, reauthorizes a critical 
 program for rare pediatric disease drug development, and further incentivizes 
development of orphan products. We hope the legislation, which includes sorely 
needed additional funding for the National Institutes of Health and the Food and 
Drug Administration, will foster an environment that is conducive to the 
development of new therapies and improve patients’ access to them.  
On behalf of the rare disease community, NORD thanks the Committee for its 
months of collaboration, thoughtfulness and hard work.  Today’s vote 
underscores the bipartisan commitment to move this legislation through the 
House and we hope the same spirit of collaboration leads to prompt 
consideration by the Senate.
Peter L. Saltonstall
President and CEO, National Organization for Rare Disorders (NORD)

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