‘For Life:’ A Family’s Promise
HAE patient Cheryl Blackwell-Johnson finds strength in her family’s unique bond.
Solving the Information Shortage
Experts say rare disease patient registries help bridge the information gap.
Happy Valentine’s Day from ‘Charm City’
A strong support system is critical all year when managing HAE.
Flu and Primary Immunodeficiencies
Fast diagnosis and treatment are a must, the CDC says.
Chocolate for Heart Health?
Flavonoids might protect the cardiovascular system, but don’t overdo it.
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.