Joyce Graff: Empowering Patients

Highly accomplished President Elect, Joyce Graff spoke about her recent trip to Bulgaria, where she spoke at a conference on Radiation Protection in Medicine, sponsored by the International Atomic Energy Agency. For fifteen years she helped her late husband manage as best they could with von Hippel-Lindau.  When their son was diagnosed with the same disease nine years after his father's death, Joyce became his patient advocate, gathered information from around the world, and in 1993 founded the VHL Alliance. Joyce also wrote a VHL Handbook for patients and their families. The Alliance is now a global organization. 

 

She has always been an advocate for folks with serious diseases and now is working on some diseases which are even more rare than VHL.  Through the Powerful Patient she works to help people understand what is going on, ask better questions, and work as a partner in their medical teams.  This year she has three published articles about the Patient's perspective on radiation safety in medicine.