Rare Disease: Where Precision Medicine Was Born
As the mother of a child with a rare disorder, I’ve watched…
How Technology Will Improve the Future for Rare Diseases
Our collaboration with Global Genes and Sharon Moalem, MD, PhD at H@cking…
Moving Towards Personalized Care with Healthcare’s Biggest Advocates
When my daughter Casey was born with nail-patella syndrome (NPS), the orthopedic…
Supreme Court Ruling Impacts Genetic Research
On June 13, 2013, the US Supreme Court ruled that human genes…
Advocacy Group Helped Fund New FDA-Approved Orphan Drug
I like to say rare diseases are different. One key way is…
New Mobile App Connects Duchenne Families to Clinical Trials
I have been privileged to know Pat Furlong for the past several…
Rare Disease Day 2013: Help Spread Awareness
Each year Rare Disease Day is celebrated worldwide on the last day…