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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

October 23, 2013

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

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

Posted 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