Support For You and Your Family
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 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.
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.
[This should be updated to include IRare – Canadian call centre support etc.]
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Become a volunteer and help make a change! VHL is a rare disease, and we need your help to focus attention and awareness on VHL to the public.