VHL: 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

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

VHL can reoccur throughout someone's lifetime and can start in childhood. "The mean age of onset of 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

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

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. Your contribution will make an impact. Thank you, Henry SeoJoin

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