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September 30, 2016

TOPIC: Uncategorized

President Obama Signs Advancing Hope Act

Posted by Jennifer Huron

 

white-houseWashington, D.C., September 30, 2016 – Today, President Obama signed the Advancing Hope Act (S. 1878), extending the Rare Pediatric Disease Priority Review Voucher (PRV) program until December 31.

“On behalf of the 15 million children with rare diseases, we thank the President for signing the Advancing Hope Act so… Read More

September 30, 2016

TOPIC: Featured News, Patient Stories, Press Releases

A New Partnership that Helps Raise Awareness of Rare Diseases

Posted by Jennifer Huron
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We’re thrilled to announce a new partnership that will help raise awareness of rare diseases and connect The Mighty‘s wide-reaching readership with NORD resources. As part of the partnership, NORD, the leading independent 501(c)(3) advocacy organization dedicated to helping people with rare diseases, now has a growing home page on The Mighty and will appear on many… Read More

September 30, 2016

TOPIC: Events, Get Involved

Running for Rare Named an Official Charity Partner

Posted by Jennifer Huron

32nd Edition of Skechers Performance Los Angeles Marathon Set for March 19, 2017

skechers-la-marathon-logoWashington, D.C., September 30, 2016—Running for Rare was named an Official Charity Partner of the 2017 Skechers Performance Los Angeles Marathon, it was announced today by the National Organization for Rare Disorders (NORD)®. The race… Read More

September 29, 2016

TOPIC: Advocacy

$1.1 Billion in Federal Funding to Fight the Zika Virus

Posted by Jennifer Huron

white-houseWashington, 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 President and CEO Peter L. Saltonstall following President Obama’s signature of the Continuing Resolution today.

“On behalf of the… Read More

September 23, 2016

TOPIC: Advocacy, Press Releases

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

Posted by Jennifer Huron

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), and Lamar Alexander (R-TN), the Senate voted unanimously to… Read More