VHL Canada

is an active support 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 national Peer Support Volunteer

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... It is not only a medical journey, VHL has logistical and emotional impacts on the lives of both the patients and everyone around them..." 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

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