Wednesday, February 3, 2016

Orphan Product Extensions Now, Accelerating Cures and Treatments

Just received this update on the proposed OPEN Act. It is stalled in the Senate and we need to band together to show our support. Consider sending a message to your representatives. It takes less than three minutes to do and it could make a difference, Thank you.

Dear Rare Disease Advocate,

As you may already know, we are working to pass legislation called the OPEN ACT (Orphan Product Extensions Now, Accelerating Cures & Treatments) that could double the number of treatments available to rare disease patients.

The OPEN ACT was passed in the House of Representatives last July as part of the 21st Century Cures Act (HR 6). However, the companion legislation in the Senate has stalled, and we are running out of time to get it enacted into law in an election year.

Please CLICK HERE to send an email to your legislators asking them to co-sponsor this lifesaving legislation.

This bipartisan bill could bring hundreds of safe, effective, and affordable medicines to rare disease patients within the next several years by incentivizing drug makers to repurpose therapies for the treatment of life-threatening rare diseases. We need your help to make this bill a law.

Thanks again for your support.

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