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
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
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…)
