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December 13, 2016

TOPIC: Press Releases, Advocacy

President Signs 21st Century Cures Medical Innovation Bill Into Law

Posted at December 12, 2016 04:20 pm by Jennifer Huron

president-signs-21st-cent-curesToday, President Obama signed into law the 21st Century Cures Act, a game-changing bill for medical innovation.  The bill includes many provisions that will improve the discovery, development, and delivery of orphan therapies for rare disease patients, including:

  • An extension of the Rare Pediatric Disease Priority Review Voucher… Read More

December 13, 2016

TOPIC: Press Releases, Advocacy, Get Involved

State Report Card to Help People with Rare Diseases

Posted at December 12, 2016 07:59 am by Jennifer Huron

rareactionnetworkWashington, D.C., December 13, 2016—A majority of states are not measuring up on legislative solutions that reduce the burden of rare diseases affecting 30 million Americans, according to a new report released today by the National Organization for Rare Disorders Rare Action Network (NORD RAN). The report, “State Report… Read More

December 7, 2016

TOPIC: Press Releases, Advocacy

Senate Passes Landmark 21st Century Cures Act

Posted at December 12, 2016 02:38 pm by Jennifer Huron

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 sign the bill into law later this week.

“Passage of… Read More

November 14, 2016

TOPIC: Press Releases, Advocacy

NORD Ready to Address New Challenges Based on Election Results

Posted at November 11, 2016 12:27 pm by Jennifer Huron

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 U.S. election.

“Many of us were surprised by the outcome of the presidential election last week.  The pollsters and the pundits were predicting a different outcome.  But the long election… Read More

November 3, 2016

TOPIC: Press Releases, Patients & Members, Research

Fibrous Dysplasia Foundation and NORD Launch Cutting-Edge Study of Fibrous Dysplasia/McCune-Albright Syndrome

Posted at November 11, 2016 09:15 am by Jennifer Huron

FDLOGO1RGBWashington, D.C., November 3, 2016—The Fibrous Dysplasia Foundation and the National Organization for Rare Disorders announce the launch of an ambitious study to research fibrous dysplasia/McCune-Albright syndrome (FD/MAS). The new study, the FD/MAS Patient Registry, creates a platform for patients around the world to share information about FD/MAS. Its… Read More