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Archives for: September 6th, 2018

NORD 35th Anniversary Blog Series: 2010-2018 (Present)

Written by Jennifer Huron on September 6, 2018

2018 is a big year for the rare disease community – NORD is celebrating its 35th anniversary.  For the past 35 years, NORD has taken pride in being the rare disease community’s biggest advocate.  Our policy, research and other efforts have played a significant… Read More

Senate Passes Landmark 21st Century Cures Act

Written by Jennifer Huron on December 7, 2016

Senate Passes Landmark 21st Century Cures Act

us-senateWashington, D.C., December 7, 2016—Today, the United States Senate overwhelmingly approved the 21st Century Cures Act, a game-changer for medical innovation, by a bipartisan vote of 94-5. The President is expected to… Read More

November 15th Day of Action: 21st Century Cures

Written by Jennifer Huron on November 15, 2016

 

On Tuesday, November 15th, take action to support the 21st Century Cures Act! This vital piece of legislation includes billions of dollars in new funding for critical research at the National Institutes of Health, new funding to accelerate drug approval at the Food and Drug Administration, and several provisions… Read More

Senate Passes Short-Term Agreement to Accelerate Treatments for 15 Million Sick Children with Rare Diseases

Written by Jennifer Huron on September 23, 2016

Unanimous vote extends the Rare Pediatric Disease Priority Review Voucher Program with important policy changes through December

Washington, D.C., September 23, 2016 – On Thursday, the Senate reached an important compromise to accelerate new treatments to help 15 million sick children with rare diseases.

Led by Senators Robert Casey (D-PA), Johnny Isakson (R-GA),… Read More