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 often a life-long battle that can start in childhood. Treatment and monitoring involves specialist appointments, multi-care clinics, tests (e.g. MRI), surgeries, dialysis, medication, rehabilitation and other procedures for reoccurring tumours in common areas such as the brain, spine, eyes, kidneys, and pancreas. Often, someone will have to deal with problems in more than 1 organ.
🍁 VHL Canada facilitates social-emotional, informational, and practical peer support for patients and their families dealing with VHL in Canada. 1/36,000 or 1000 in Canada have VHL. Peer support initiatives are run by and for the participants across the country. We’re a small charitable organization started by a patient in 2016.
🍁 VHL Canada facilitates social-emotional, informational, and practical peer support for patients and their families dealing with VHL in Canada. 1/36,000 or 1000 in Canada have VHL. Peer support initiatives are run by and for the participants across the country. We’re a small charitable organization started by a patient in 2016.
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Find us here:
- Canadian Cancer Society
- Canadian Organization of Rare Disorders (CORD)
- Canadian Directory of Genetic Support Groups
- Rare Disease Information and Resource Centre - Quebec
- Community and Social Services - Ontario
- Wellspring Cancer Support- Toronto
- Government of Canada
- ORPHANET – Europe & International
