My son’s rare disease diagnosis spurred me to ditch Big Pharma for a biotech startup

Midland boy diagnosed with rare disease after sudden weight loss - Birmingham Live

"Cheeky chappy" Reagan Woodward from Kingswinford was diagnosed shortly after he was born

My son’s rare disease diagnosis spurred me to ditch Big Pharma for a biotech startup

Most individuals diagnosed with a rare disease won’t live to become teenagers or adults. I knew what I had to do.

Focus of NORD study: Rare disease community's lived experiences

The National Organization for Rare Disorders (NORD) is seeking participants for its survey-based study Living Rare, which aims to better understand the real-world lived experiences of people in the U.S. with rare diseases. Living Rare, the first large-scale study of its kind in the U.S., seeks to capture the changing unmet needs and challenges faced by rare disease patients over time, according to the nonprofit. The study’s ultimate goal is to i…