By Elizabeth Silva Anderson, ECD Global Alliance, a NORD Member Organization
An interview with Erdheim-Chester Disease patient, Janet Bunge, in honor of Erdheim Chester Disease Awareness Week (#ECDAwareness), Sept. 12-17, 2016
“I belong to ECD…. Read More
This summer marked our one-year anniversary of hosting the Rare Disease of the Day campaign on our Facebook page and
Written By: Kate Bartlett
“I came across NORD’s website when I was doing research for my friend Heather Von St. James who was diagnosed with mesothelioma, 3 1/2 months after… Read More
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… Read More
Noah Maria Victoria wrote her first poem at the age of 13 or 14 as a homework assignment. She composed “The Window,” a metaphor for her journey and countless trips to Children’s… Read More
