Written by Christina Jensen on February 13, 2017
NORD is pleased to be working with The Hole in the Wall Gang Camp again this year to host the second-ever rare disease summer family camp, June 1-4 in Ashford, Connecticut. For the second year, they will be hosting a special Summer Family Camp for children and families impacted by… Read More
Written by Jennifer Huron on August 12, 2015
Sean Hepburn Ferrer, son of actress Audrey Hepburn, is calling for more awareness of rare diseases in a new PSA with the National Organization for Rare Disorders (NORD).
Audrey Hepburn died of a rare form of cancer and it was the way she lived her life, demonstrating that every life matters,… Read More
Written by Lisa Phelps on June 11, 2014
June 10th was an emotional – but very educational – day for everyone who attended the Food and Drug Administration’s public meeting on Patient-Focused Drug Development for Inborn Errors of Metabolism. (more…)