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Archives for: July 25th, 2017

NORD Publishes New Rare Disease Report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL)

Written by Christina Jensen on July 25, 2017

Washington, D.C., July 25, 2017—As part of its ongoing series to promote awareness and education regarding rare diseases, the National Organization for Rare Disorders (NORD) has published a report on Retinal Vasculopathy with Cerebral Leukodystrophy (RVCL). This new resource is available free online to individuals around the world.

As the primary… Read More

Tweetchat on Genetic Testing, #genetest101

Written by Christina Jensen on July 13, 2017

NRD-1082 ChildNatl_Tweetchat_v6

Tweetchat Coordinates
When: Thursday, July 13, 2:00 p.m. – 3:00 p.m. ET
Tweetchat Hashtag:… Read More

NORD Responds to AHIP Report on Orphan Drug Act

Written by Jennifer Huron on September 2, 2016

By Peter L. Saltonstall

One of the most successful pieces of legislation ever passed by the Congress is the Orphan Drug Act of 1983 (ODA).  It was intended to stimulate the research and development of new therapies for rare diseases, which were generally neglected by the research community and the drug… Read More