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Senate: Take Action on Innovation for Healthier Americans

In July, the House passed the 21st Century Cures Act (HR 6), historic legislation that holds the potential to dramatically advance rare disease research and treatments. The Senate’s companion bill to 21st Century Cures, titled “Innovation for Healthier Americans“, has stalled, and we need your help to ensure the bill is acted upon TODAY. Patients can’t wait, as a delay in legislation is a delay in treatment.

Please take a moment to write your Senator, urging them to prioritize Innovation for Healthier Americans:
THANK YOU for your support and for keeping up the fight on behalf of the rare disease community. Please remember to share this alert with your networks and on social media.

ACTION ALERT: The Advancing Research for Neurological Diseases Act (S. 849)

Invite your U.S. Senators to attend a briefing on the Advancing Research for Neurological Diseases Act (S. 849) on September 16 from 11:30 to 12:30 in the Senate Russell Building, room 485. The briefing is sponsored by the American Academy of Neurology, American Brain Coalition, Brain Injury Association of America, Epilepsy Foundation, International Essential Tremor Foundation, National Multiple Sclerosis Society, Parkinson’s Action Network, Rare Disease Legislative Advocates, Research!America, Tourette Association of America, and United Spinal Association.

For more information and to contact your Representative, click here.


ACTION ALERT: Thank the House for 21st Century Cures

The House passed historic bipartisan legislation called the 21st Century Cures Act HR 6, and they deserve our thanks for ensuring that the voice of the rare disease community was heard.  Let’s show every member who supported 21st Century Cures how much their hard work means to us, and how eager we are to see this meaningful legislation make its way through the Senate.  Please take a moment to thank your representative for supporting the 21st Century Cures Act and the rare disease community.



RareVoice Awards Gala Honors Rare Disease Advocates and Congressional Leaders

Dr. Steve Groft received a Lifetime Achievement award for his dedication to stimulating research and advancing development of therapies during his tenure at the FDA and NIH, and the Chairman and members of the House Energy and Commerce Committee were recognized for their leadership on the 21st Century Cures Act which has several provisions critical to the rare disease community, including incentives to spur development of new therapies.[...]

Congressman Eric Swalwell Joins the Congressional Rare Disease Caucus

In July, Congressmen Swalwell spoke to rare disease advocates at the University of California San Francisco, as part of Rare Disease Legislative Advocates' West-Coast Conference, on the importance of advancing 21st Century Cures legislation through Congress to spur the development of treatments and help many people suffering from rare diseases[...]

Advancing Targeted Therapies for Rare Diseases Act of 2015

U.S. Senators Michael Bennet (D-CO), Richard Burr (R-NC), Elizabeth Warren (D-MA), and Orrin Hatch (R-UT) introduced the Advancing Targeted Therapies for Rare Diseases Act of 2015. This bipartisan bill will help advance the development of targeted drugs for patients with serious or life-threatening rare genetic diseases.[...]

From FDA Law Blog: Priority Review Voucher Updates- Valuation, Eligibility, Reauthorization

Hardly a week goes by without news of FDA’s priority review voucher (“PRV”) programs. The last several weeks are no exception. In this blog post, we focus on five key updates related to FDA’s tropical disease and rare pediatric disease (“Pediatric”) PRV programs:[...]

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