Just one recent news story that I identify with as a VHL patient who also tries to be hopeful (and helpful) in personal and work life.
I've signed up for Google Alerts for “VHL” and “rare diseases” and follow other Facebook pages and websites e.g. VHL Alliance, Canadian Organization for Rare Disorders (CORD), Canadian Association of Psychosocial Oncology (CAPO) Digest email list, etc. - Henry
In the news...
Grafton MA, USA– Festival of Hope, a fundraising event in honor of Julie Flynn, guidance counselor who lost her battle with Von Hippel-Lindau (VHL) Syndrome at the end of March of this year. Flynn was first diagnosed at the age of 13 and lost an eye as a result. Throughout her life, she endured many surgeries and chemotherapy…
I think living with VHL has made me a more compassionate, empathetic and hopeful person. This is an added asset... Link to article