BLOGS 2
2023 continued...
Nov
11/30 In meantime “Genetic Overview & Subtyping of VHL”?
11/28 Pediatric VHL and CNS, Eh?
11/27 Surgeon understands my VHL-demands!
11/27 Belzutifan Video Examples
11/25 Becoming… Me
11/24 Famous celebrities and VHL
11/23 Online support group 2015-‘23
11/21 VHL Canada donations 2019-2023 etc.
11/18 Blog Update 2016-2023
11/17 VHL Canada Revenue Expenses Oct.31/23
11/16 Courageous Perspectives
11/05 When I’m Sixty-Four… Prognosis?
11/02 Website activity: CORRECTED UPDATED VERSION 2023
Oct
10/29- Quebec Rare/Politique québécoise pour les maladies rares
10/29- Your Data VHL Canada
10/18- Peer Support Tracking
10/16- vhlcan.ca website clicks…
10/05- VHL Canada synchronous asynchronous network
Sept
09/25- Snapshot: Online peer support
09/24- Screening requests online group and chat
09/22- VHL Multisystem COVID
09/20- Support Tracking June, July and August '23
09/17- Hope, Mission or Disclaimer
09/16- Extra difficulties lately
Aug
08/29- Petition closes Aug 31! CORD...
08/23- VHL young people
08/21- VHL Nike Shoe 2022?
08/16- Blog and Online Support Activity
08/15- VHLC Blogs Relevance No Time, etc?
08/10- VHL Canada Blogs Informative Supportive?
08/08- Health Canada VHL Awareness
08/06- CADTH Canadian VHL Specialists Patients Belzutifan Update
08/05-More Interviews Summaries Opinions
July
June
o Being scrappy… works for me, too
o Health Canada Updated Links Welireg /Belzutifan
o Example of subscriber extra opens and clicks
o Popular recent blogs opens interest?
o Canada drug plan inequities and your VHL?
o Group memberships overlap and cycle
May Awareness 2023
o VHL Well On Web Canadian Leader
o VHL Rare Disorder (and Family or Inherited Cancer Syndrome) Canada
o VHL Alliance US Congress Advocacy Success
o My VHL and Emergency Department Visits
VHL Clinical Toronto Hospital Network, Apr 17/23
VHL Awareness Canada.ca May 2023
“Similar” tumour or cancer groups notes* Apr.13/23
Belzutifan/Welireg brief update Canada internet search (Jan.25/23)
My update notes on Belzutifan (Welireg) Canada #4 April 6/22
Peer Support & Other Volunteer Staff Hours 2022
VHL Canada, Income Tax Act, CRA, Charities Directorate
VHLC My doctor becomes patient Toronto (My VHL Neurosurgeon)
Updated Blog (Group) Totals 2016-2023
"It’s not... cancer?" (Mar 28/23 reply to a blog)
VHLC Hours, Support and Financial Update (Feb-Dec 2021)
Most opened blogs update Dec. 8/21
Other “outcomes” Update 2021- VHL Cancer Syndrome
BC, AB, NL, ON adoptions, blended families and children with VHL