From where it all began in Wellesley, Massachusetts, to the frigid waters of Adelaide, Australia, celebrities and other supporters globally…
Articles by Mary Chapman
A new registry for those with epidermolysis bullosa (EB) and their families, from the patient advocacy organization debra…
Eddie Vedder of the rock band Pearl Jam will perform two concerts to support EB Research Partnership (EBRP) following…
The National Organization for Rare Disorders’ (NORD) “Living Rare, Living Stronger Patient and Family Forum” is back in person…
At its first virtual investor event, biotech company Centogene set a bold mission: to cure 100 rare diseases…
To help patient advocacy leaders and their partners better understand how global health statistics codes — known as ICD codes…
Those who wish to gain practical tools for living optimally with rare diseases are encouraged to attend the annual…
Rare Disease Day at NIH, organized by the National Institutes of Health (NIH) and taking place on March 1,…
Scores of virtual events are afoot around the world to mark Rare Disease Day 2021 on Feb. 28. The…
While progress was made last year on newborn screening and other policy issues critical to rare disease patients, a “…
Caring for a loved one with a rare disease, especially during these uncertain times, demands significant time, attention, patience, and…
The National Organization for Rare Disorders (NORD) is seeking individuals willing to share real-life experiences with rare diseases to…