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February 3, 2014

TOPIC: Featured News, Patients & Members, Advocacy

Building on Policy Momentum

Posted at February 2, 2014 07:18 pm by Rose Gallagher

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…)

December 16, 2013

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

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

October 23, 2013

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

30 Years After the Orphan Drug Act: It Still Takes Too Long for People with Rare Diseases to Get an Accurate Diagnosis

Posted at October 10, 2013 02:44 pm by Mary Dunkle


NORD recently posted the following question on its Facebook page: How long did it take you or a loved one to get an accurate diagnosis?

We were stunned at the response. Within the first few hours, we got 200 replies and 20% of those who responded had waited 10 years or longer to get an accurate… Read More