Living with VHL is challenging for families and caregivers as often a carrier can also be a caregiver and vice versa, due to the genetic nature of the disease.  VHL surveillance and treatment can be as much of a a roller coaster for caregivers as it is for patients and it is helpful to be able to talk to people who have experienced or are currently going through similar experiences as you are.  

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In Canada the Canadian Cancer Society website (Cancer.ca) identifies quite a bit of information on VHL and they have a lot of local support available.

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Our Partner, the US VHL Alliance has some support available for just this reason that we encourage you to try out, if only just to talk for a while or join an on-line chat group.  

 

Our disease affects one in 36,000 people, so in Canada we expect to find just under 1000 VHL patients.  When we partner with the US VHL Alliance we find another 8.900 patients to learn from and share experiences.