Written by Valaree DonFrancesco on October 9, 2020
Washington, DC, October 9, 2020—On October 8 and 9, the National Organization for Rare Disorders (NORD®) virtually hosted the 2020 Rare Diseases and Orphan Products Breakthrough Summit, the first time the organization representing over 25 million Americans impacted… Read More
Written by Lisa Sencen 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
Written by Jennifer Huron on March 17, 2016
Continuing its annual tradition of recognizing the people, organizations, advocates and companies who are making a difference in the fight against rare diseases, the National Organization for Rare Disorders (NORD)® announces the 2016 Rare Impact Award recipients to be… Read More
