The MDA Advocacy Newsletter just announced that the 21st Century Cures legislation passed the House and Senate. This is good news and another positive step forward in healthcare and research..

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21^st Century Cures

After more than two years of bi-partisan effort, a final version of 21^st Century Cures legislation (H.R. 34) passed in both the House and the Senate. You will recall that in July 2015, the House passed an earlier version of the bill (H.R. 6) and that multiple individual provisions similar to those in Cures also moved along in the Senate committee over the course of the year. The version of Cures passed by Congress this week represents a larger and more comprehensive bill that evolved over months as the House and Senate worked together. The next step is for the bill to be signed into law, which should happen quickly as President Obama has voiced strong support for the legislation.
21^st Century Cures includes many provisions that impact the discovery, development and delivery of treatments and cures for disorders under MDA's umbrella, and that impact access to services including:

• Increased biomedical research funding;
• Increased support for and modernization of regulatory review and oversight;
• Incentives for rare disease drug development;
• Advancing targeted therapies (S. 2030);
• Increased incorporation of the patient voice in drug development; and
• Six-month delay in implementing planned cuts for complex rehabilitative technology.

It's Time For The Final Push

I have written about this proposed bill several times over the past year. We were able to help push it through the House and now it is in the Senate's hands. I urge you to take 3-5 minutes to show your support for this CuresNOW bill.  Thank you.

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We Need #CuresNow for  Rare Diseases! Today, June 7, join rare disease advocates around the country and tell your Senators to support the Senate Cures Legislation. This month is the last chance for Senate Cures to pass before the Senate is out of session until after the November election. Senate Cures (also called the Senate Innovation Act for Healthier Americans) is the companion legislation to the 21st Century Cures Act, which passed in the House last year. This vital package includes billions of dollars to help the rare disease community, including new funding for critical research at the NIH and to accelerate drug approval at the FDA, and several other provisions.   NORD is proud to work with other advocates across the country to unite and make sure the Senate gets our message loud and clear!

Take Action Time is running out and we need your help to move the Senate Cures Legislation! Join advocates from across the country and call the Senate TODAY! Join the Thunderclap campaign (sign up before 3:30pm EDT) and use social media to add your voice Call your members of Congress to show your support for the Senate Cures Legislation Email your members of Congress and urge them to support this piece of legislation

Background: What is 21st Century Cures?

NORD worked with its Member Organizations and other patient advocates to help ensure the 21st Century Cures Act was passed in the House last year. As background information, here is some of the work that we accomplished together: Sent a letter to the House Energy & Commerce Commitee from NORD and Member Organizations Comments to the House Energy & Commerce Committee Urged Advocates to call Congresspeople to tell them to support 21st Century Cures Act

Alone we are rare. Together we are strong®.

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.