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, 2015 – The 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)