Peer Support & Information

Group Chat Messenger & Facebook Posts. Group Chat every Wednesday 7:30-8:30 pm EST. Group moderation with PSV*, coping information, updates and outreach.

General Inquiries, Outreach and Awareness - Anything related to VHL in Canadian context etc. Public Facebook (and Twitter). Regular effort to connect with โ€œnewโ€ Canadians. Official website and email address (domain):

Patients & Families say...

Individual Contacts and support or - Email/Chat/Text/Phone with PSV*

VHL Alliance (1993): the "international" US VHL Patient Organization with permanent staff

"Canada" and VHL themed blogs May 2023

๐Ÿ VHL hRCC 17 researchers from Canada
๐Ÿ VHL Mother Son Families Quebec RQMO
๐Ÿ Husbandโ€™s (VHL) family CMA Journal 1986
๐Ÿ VHL Awareness 2023 Niagara Falls Update
๐Ÿ VHL Canada Montreal Neuro Patient Resource
๐Ÿ Before kids go blind Quebec
๐Ÿ VHL - Canadaโ€™s Drug Approval (steps)
๐Ÿ Canadian Networking VHL Research Symposium
๐Ÿ VHL Canada listed with Canadian Cancer Society

๐Ÿ Canadian Networking VHL Medical Research Symposium

๐Ÿ VHL NL, NB, ON 1986 Dr. Jane Green

๐Ÿ NL genetics diseases awareness Dr. Jane Green 2023

๐Ÿ Geneticist NL hereditary cancers Order of Canada

๐Ÿ Belzutifan research story U of T Canada

๐Ÿ Summary Welireg /Belzutifan Health Canada

๐Ÿ VHL Clinical Specialist Care in Canadian Hospitals

๐Ÿ VHL Awareness Canada May 2023 -Links are fixed

๐Ÿ Canadian Agency for Drugs and Technologies and Belzutifan


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