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Patient Stories

A Group No One Applies to Join

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

Celebrating Awareness: One-Year Anniversary of Rare Disease of the Day

Rare Disease of the Day-feat imageThis summer marked our one-year anniversary of hosting the Rare Disease of the Day campaign on our Facebook page and Read More

Becoming a Marathon Runner

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: 2016 Rare Impact Award Honoree

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 Victoria: 2016 Rare Impact Award Honoree

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