Group Chat Messenger & Facebook Posts. Group Chat every Wednesday 7:30-8:30 pm EST. Group moderation by 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
Individual Contacts and support or contact@vhlcan.ca - Email / Chat /Text / Phone with PSV*
09/22/2023 - 🍁 VHL Multisystem COVID
09/20/2023 - 🍁 Support Tracking June, July and August '23
09/17/2023 - 🍁 Hope, Mission or Disclaimer
09/16/2023 - 🍁Extra difficulties lately
Aug
08/29/2023 - Petition closes Aug 31! CORD...
08/23/2023 -🍁 VHL young people
08/21/2023 -🍁 VHL Nike Shoe 2022?
08/16/2023 -🍁 Blog and Online Support Activity
08/15/2023 -🍁 VHLC Blogs Relevance No Time, etc?
08/10/2023 -🍁 VHL Canada Blogs Informative Supportive?
08/08/2023 -🍁 Health Canada VHL Awareness
08/06/2023 -🍁 CADTH Canadian VHL Specialists Patients Belzutifan Update
08/05/2023 -🍁 More Interviews Summaries Opinions
& “Canada” theme...
o VHL research’s highest funder in Canada
o VHL hRCC 17 researchers from Canada
o VHL Mother Son Families Quebec RQMO
o Husband’s (VHL) family CMA Journal 1986
o VHL Awareness 2023 Niagara Falls Update
o VHL Canada Montreal Neuro Patient Resource
o VHL - Canada’s Drug Approval (steps)
o Canadian Networking VHL Research Symposium
o VHL Canada listed with Canadian Cancer Society
o Canadian Networking VHL Medical Research Symposium
o VHL NL, NB, ON 1986 Dr. Jane Green
o NL genetics diseases awareness Dr. Jane Green 2023
o Geneticist NL hereditary cancers Order of Canada
o Belzutifan research story U of T Canada
o Summary Welireg /Belzutifan Health Canada
o VHL Clinical Specialist Care in Canadian Hospitals
o VHL Awareness Canada May 2023 -Links are fixed
o Canadian Agency for Drugs and Technologies and Belzutifan
More
Peer Support: Social-Emotional, Informational & Appraisal
VHL Canada BLOGS 2023