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 “new” Canadians. Official website and email address (domain): contact@vhlcan.ca
Patients & Families say...
Individual Contacts and support or contact@vhlcan.ca - 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
🍁 VHL hRCC 17 researchers from Canada
🍁 VHL Mother Son Families Quebec RQMO
🍁 Husband’s (VHL) family CMA Journal 1986
🍁 VHL Awareness 2023 Niagara Falls Update
🍁 VHL Canada Montreal Neuro Patient Resource
🍁 Before kids go blind Quebec
🍁 VHL - Canada’s Drug Approval (steps)
🍁 Canadian Networking VHL Research Symposium
🍁 VHL Canada listed with Canadian Cancer Society
🍁 Canadian Networking VHL Medical Research Symposium
🍁 VHL NL, NB, ON 1986 Dr. Jane Green
🍁 NL genetics diseases awareness Dr. Jane Green 2023
🍁 Geneticist NL hereditary cancers Order of Canada
🍁 Belzutifan research story U of T Canada
🍁 Summary Welireg /Belzutifan Health Canada
🍁 VHL Clinical Specialist Care in Canadian Hospitals
🍁 VHL Awareness Canada May 2023 -Links are fixed
Canadian VHL Alliance (1998)
Other groups...