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February 3, 2014

TOPIC: Advocacy, Featured News, Patients & Members

Building on Policy Momentum

Posted 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 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