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Archives for: May 11th, 2016

Desiree Lyon Howe: 2016 Rare Impact Award Honoree

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

Running for Rare Marathon Team Expands Under NORD

Written by Jennifer Huron on March 11, 2016

running4rare_NORDThe Running for Rare marathon team will expand under new governance with the National Organization for Rare Disorders (NORD), the leading independent nonprofit representing all people with rare diseases and disorders. NORD will take over the program, which uses running… Read More

NIH Rare Disease Day Tweetchat

Written by Lisa Sencen on February 22, 2016

NIH, NCATS, and NICHD are starting to plan a Twitter chat on rare diseases. The chat will take place Monday, February 22, 2016 from 2:00-3:00 pm ET using #NIHchat.