Published December 2, 2016 by NORD
We are pleased to announce that today the House of Representatives has passed the National Defense Authorization Act (S.2943) with language that substantially expands coverage for medical foods in the …
Continue reading “House Votes to Expand Medical Foods Coverage for Military Families”
Read morePublished November 29, 2016 by NORD
We can’t stop now. #CuresNow has not yet passed. Please consider calling your Congressmen today to add your voice!
Read morePublished November 15, 2016 by NORD
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 …
Continue reading “November 15th Day of Action: 21st Century Cures”
Read morePublished November 14, 2016 by NORD
Washington, D.C., November 14, 2016—The following statement was issued by Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD), following the results of the recent …
Continue reading “NORD Ready to Address New Challenges Based on Election Results”
Read morePublished September 30, 2016 by NORD
32nd Edition of Skechers Performance Los Angeles Marathon Set for March 19, 2017 Washington, D.C., September 30, 2016—Running for Rare was named an Official Charity Partner of the 2017 Skechers …
Continue reading “Running for Rare Named an Official Charity Partner”
Read morePublished September 29, 2016 by NORD
Washington, D.C., September 29, 2016 – The National Organization for Rare Disorders (NORD), the leading independent nonprofit organization representing the 30 million Americans with rare diseases, released the following statement from …
Continue reading “$1.1 Billion in Federal Funding to Fight the Zika Virus”
Read morePublished September 23, 2016 by NORD
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 …
Read morePublished September 22, 2016 by NORD
More than 300 organizations join forces to ask Congress to provide robust, sustained, and predictable budget increases for the NIH Washington, D.C., September 22, 2016— The National Organization for Rare …
Read morePublished September 15, 2016 by NORD
The Hill, a top U.S. political website, read by Congressional offices, the White House, political pundits, and more, today published the following op-ed by NORD President and CEO, Peter L. …
Read morePublished September 13, 2016 by NORD
The National Organization for Rare Disorders submitted comments to the Institute for Clinical and Economic Review (ICER) in response to their call for comments on how to improve their value framework …
Continue reading “ICER Comments Submitted”
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