VHL Canada is a small non-profit registered in Canada that directly provides a social-emotional support system for VHL patients and their families in Canada

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 disease affects 1 in 36,000 people around the world regardless of gender, race, socioeconomic, or geographic circumstances ....”

Started by me, a patient, to fill a gap in 2016, VHL Canada has a very small group of volunteers that contributes hundreds of hours annually.
Thank you,
Henry Seo