Press Releases Archives - Page 26 of 28 - NORD (National Organization for Rare Disorders)

March 17, 2016

TOPIC: Press Releases, Featured News, Events

NORD Announces 2016 Rare Impact Award Recipients to be Honored on May 17

Posted at March 3, 2016 08:00 am by Jennifer Huron

Continuing its annual tradition of recognizing the people, organizations, advocates and companies who are making a difference in the fight against rare diseases, the National Organization for Rare Disorders (NORD)® announces the 2016 Rare Impact Award recipients to be honored on May 17.

In its inaugural year, the Rare… Read More

Tags: Peter L. Saltonstall, Senator Orrin Hatch, Rare Impact Awards, Fundraiser, Sanofi Genzyme, Noah Victoria, American Porphyria Foundation, Desiree Lyon, Debra Miller, Arthur Caplan, Dawn Laney, Stephen Cederbaum, Friedreich’s Ataxia Research Alliance, Alexion Pharmaceuticals, Asklepion Pharmaceuticals, United Therapeutics Corporation, Wellstat Therapeutics Corporation, Congresswoman Doris Matsui, Warner Theatre, The Recessionals, BioMarin Pharmaceutical, #RareImpact, Astellas Pharma, press release

March 15, 2016

TOPIC: Press Releases, Events, Get Involved

Running for Rare Named an Official Charity Partner of the 2016 TCS New York City Marathon Set for Sunday, November 6, 2016

Posted at March 3, 2016 03:20 pm by Jennifer Huron

Running for Rare was named an Official Charity Partner of the 2016 TCS New York City Marathon, it was announced today by the National Organization for Rare Disorders (NORD). The race will take place on Sunday, November 6, 2016.

“Running for Rare is thrilled to partner… Read More

Tags: Peter L. Saltonstall, Undiagnosed, National Institutes of Health, Running4Rare, Running for Rare, TCS New York City Marathon, National Institutes of Health (NIH) Undiagnosed Diseases Network (UDN), Michael Rodgers, New York Road Runners, #TCSNYCMarathon, press release

March 11, 2016

TOPIC: Press Releases, Events, Get Involved

Running for Rare Marathon Team Expands Under NORD

Posted at March 3, 2016 12:18 pm by Jennifer Huron

The Running for Rare marathon team will expand under new governance with the National Organization for Rare Disorders (NORD), the leading independent nonprofit representing all people with rare diseases and disorders. NORD will take over the program, which uses running as a platform to raise awareness and support for… Read More

Tags: Peter L. Saltonstall, NIH, Undiagnosed, NIH Undiagnosed Diseases Program, Patient Assistance Program, National Institutes of Health, Running4Rare, Boston Marathon, Providence Marathon, Undiagnosed Diseases Patient Assistance Program, Running for Rare, TSC New York City Marathon, David Meeker, Sanofi Genzyme, Phil Maderia, charity running team, #TCSNYCMarathon, press release

February 24, 2016

TOPIC: Press Releases, Advocacy

NORD Issues Statement on New FDA Commissioner Robert Califf, M.D.

Posted at February 2, 2016 01:52 pm by Jennifer Huron

The following statement was issued today by Peter L. Saltonstall, President and CEO of NORD, on the confirmation by the U.S. Senate of Robert Califf, M.D., as Commissioner of the Food and Drug Administration:

“On behalf of the rare disease community, I want to congratulate Dr. Califf on… Read More

Tags: Peter L. Saltonstall, FDA, press release, Robert Califf

January 4, 2016