‘For Life:’ A Family’s Promise
HAE patient Cheryl Blackwell-Johnson finds strength in her family’s unique bond.
5 Tips for High-Altitude Adventurers
Do the Winter Games make you want to head to the mountains? Read these tips first.
Rare Disease Patient Shares Inspiration
Christie Hardin met with CSL Behring workers to talk about her hereditary angioedema.
Kids With Rare Disease Win in US Deal
U.S. Congress ups Children’s Health Insurance Program funding extension to 10 years.
Solving the Information Shortage
Experts say rare disease patient registries help bridge the information gap.
Leading Active, Fulfilling Lives
Anyone coping with a rare disease knows first-hand how difficult and frustrating it can be to find the correct diagnosis and proper treatment for their condition. Sometimes it takes years. Yet, when the search is over, many people can – and do – lead active, fulfilling lives. Discover the story of Roberta Smith, one of our many patients thriving in the face of von Willebrand Disease.
von Willebrand Disease Patient
Roberta refuses to let von Willebrand Disease get in the way of an active and fulfilling life.