There are 900+ people with VHL in Canada (1/36,000)

VHL Canada (VHLC) is a peer support and information network, mainly online and by phone, for Canadian VHL patients and their families. Started in 2016 to fill a gap, we're a small registered non-profit that is run by volunteers including a permanent professional-level Peer Support Volunteer. VHLC offers the following Support & Information options:


INFORMATION on Living with VHL



VHL or von Hippel-Lindau Syndrome "is a rare genetic disease characterized by the growth of both benign and cancerous tumours in several parts of the body... more

VHL can reoccur throughout someone's lifetime and can start in childhood. "The mean age of onset is 26 years and 97% of people with a VHL gene mutation have symptoms by the age of 65. VHL disease affects males and females and all ethnic groups equally, and occurs in all parts of the world..." -NORD

"This life-long disease impacts many lives - not just the patient’s, but also the lives of everyone around them, their family and their loved ones..." Stress symptoms, "depression, anxiety, panic attacks are almost inevitable, as are financial and relationship hardships..." more