Living with and loving someone with VHL can be difficult (e.g. e.g. discouragement, blame or shame). You are not alone. We want to offer everyone the opportunity to join a VHL community in Canada. Make friends with others just like you. Sometimes you will experience something your existing support network isn’t familiar with. Join us and you will receive:
- Individual Support and Information line by Email, Online Messages, and Phone (Skype/Video Calls are possible)
- Facilitated group chats every week - Join patients and caregivers, spouses, parents, grandparents, siblings, cousins etc. with or without the disease from all across Canada. It's an open or drop-in setting...
- Facebook (closed group) to post, update and share experiences
- Regular e-newsletter/updates
- Local get-togethers (contact us as we can help you schedule local meetings)
- Our volunteers are living the same experience, so we are able to provide the empathy and understanding that you need
- "Canadian VHL Warriors" include those who may or may not have the actual disease (family members)
...from Saskatoon, Saskatchewan: I’m a 34 year old Cancer survivor. I’ve had two deep cerebellar tumours removed, vitrectomy, 19 tumours extracted from my kidneys (2x partial nephrectomy) and lots of laser eye treatments. I don’t believe in target drugs or radiation, instead I research and test alternative treatments and medication relative to treating VHL. I am a “de novo” mutation, only one in my family to have the gift, lol. I curse VHL sometimes, but for the most part it has actually enriched my life. It forced me to look at things I’d never considered before, and made me a much stronger and more confident man. Diagnosed 6 years ago, still kicking the world’s ass!