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December 2, 2016

TOPIC: Advocacy

House Votes to Expand Medical Foods Coverage for Military Families

Posted by Jennifer Huron

seal_of_the_united_states_house_of_representatives-svgWe 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 TRICARE program. The bill will now move to the Senate for consideration next week.

Medical foods are… Read More

November 29, 2016

TOPIC: Advocacy

House to Vote on New Version of 21st Century Cures Act Tomorrow

Posted by Jennifer Huron

We are excited to announce that U.S. lawmakers have finally reached an agreement on the 21st Century Cures Act, a game-changer for patients with rare diseases. This agreement comes more than one year after the House passed its original version of the bill. The first vote is expected to take place tomorrow.

Late last week, Chairmen Fred Upton (R-MI) and Lamar… Read More

November 15, 2016

TOPIC: Advocacy

November 15th Day of Action: 21st Century Cures

Posted by Jennifer Huron


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 such as the OPEN ACT and Rare Pediatric Disease… Read More

November 14, 2016

TOPIC: Advocacy, Press Releases

NORD Ready to Address New Challenges Based on Election Results

Posted 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: Patients & Members, Press Releases, Research

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

Posted 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