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March 6, 2014

TOPIC: Advocacy, Featured News, Patients & Members

NORD Calls Proposed Repeal of Orphan Drug Tax Credit “Anti-Patient and Anti-Public Health”

Posted at March 3, 2014 07:03 pm by Mary Dunkle

More than 80 rare disease patient organizations have signed onto a letter NORD will be sending to two key Congressional committees opposing the proposed repeal of the Orphan Drug Tax Credit (ODTC).  The deadline to sign on is cob Friday, March 7.  NORD will send the letter to the House Ways and Means and Senate Finance committees. Read More

February 3, 2014

TOPIC: Advocacy, Featured News, Patients & Members

Building on Policy Momentum

Posted at February 2, 2014 07:18 pm by Paul Melmeyer

The rare disease community has seen several policy wins in the past few months, some of which may have gone unnoticed. First, in November, Congress passed the National Pediatric Research Network Act as part of the PREEMIE Reauthorization Act. President Obama signed the measure into law on November 27th. (more…)Read More

December 16, 2013

TOPIC: Advocacy, Featured News, Industry, Medical, Patients & Members

Genzyme and NORD Establish Program to Help Undiagnosed Patients with Rare Diseases

Posted at December 12, 2013 08:39 pm by Mary Dunkle

CAMBRIDGE, MA and DANBURY, CT—-Genzyme, a Sanofi company, and the National Organization for Rare Disorders (NORD) today announced the creation of a fund to pay for standard diagnostic testing for people with mysterious, undiagnosed medical conditions.  The fund will help those who have applied to the National Institutes of Health (NIH) Undiagnosed Diseases Program but who cannot afford the… Read More