Scroll
To Top

Archives for: August 15th, 2017

Advance the Dialogue at the NORD Rare Summit

Written by Christina Jensen on August 15, 2017

It has been an interesting year for healthcare reform and the Orphan Drug Act, and as I’m sure you are aware; the conversation isn’t over yet. Major changes to healthcare and tax reform continue to be discussed and that is why it is so important that now, more than ever, rare… 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

Desiree Lyon Howe: 2016 Rare Impact Award Honoree

Written by Christina Jensen on May 11, 2016

Desiree Lyon Howe lived for 10 years in excruciating pain before being diagnosed with Acute Intermittent Porphyria (AIP). She was finally diagnosed at the National Institutes of Health where what would become the first therapy approved as orphan drug, Panhematin®, saved her life.  Upon… Read More