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I’ve always been inspired by families and individuals with our disease. I admire them all!

At least 4 grandparents (AB, MB, ON, NL) are active in our small Facebook group who have several (adult) children with VHL who now have their own children with VHL. They also have several nieces and nephews, and other relatives in other parts of the country. etc. with VHL. Although parents (and children) said that they “knew” about the potential VHL risks of having kids, (and we all hope for a cure), a couple of common themes from everyone was “it was worth it!” and “I’m glad you had me.”
I’ve had contact with at least a few other parents of adult children (or grandparents), with VHL over the years and they always talked about the proactive things that they did to adapt to a life of hospital visits, tests and treatments.


🍁 VHL Canada is small but our donations and support programs have been regulated by Canada Revenue Agency (CRA) Registration BN: 800804676 RR 0001 since 2016 🍁

🍁 VHL Canada facilitates peer support for people coping with VHL in Canada
CRA BN: 800804676RR0001
Our mailing address is:
VHL Canada
2938 Dundas Street West
PO Box 70510
Toronto, ON
M6P 4E7

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VHL Canada · 2938 Dundas Street West, PO Box 70510 · Toronto, On M6P 4E7 · Canada

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