Aug.8/23
🍁 Health Canada VHL Awareness
An example of some of the formal outreach or requests we -as volunteers- do as part of our VHL Canada's mission for VHL patients and family in Canada (and fulfilling our mission is actually a major CRA charitable registration requirement)
Some one from Health Canada replied to us by email for more information to qualify for their annual Calendar of Health Promotion Days for next year, 2024 (and I hope every year after that. See emails). However, we already went through a process to get on for 2023 for May (see photos). So, I responded by creating a new webpage that highlights the necessary info.
This is the link to the website page. However, If on Home page, click link "National Awareness"
And below is just the actual text...
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🍁 VHL Awareness Affiliation Links Outreach Fundraising
We are also listed as resources/affiliations
- Canadian Cancer Society
- Wellspring Cancer Support Toronto , Well on Web
- Orphanet
- Canadian Institutes of Health Research representative directly contacted us to verify and list us on Orphanet-Canada
- RQMO (Regroupement québécois des maladies orphelines - Quebec Coalition of Orphan Diseases)
- Canada Helps -Hospital (The Neuro Patient Resources)
Canadian VHL Alliance
Another patient group registered in Canada (see VHL family in Maclean’s, August 2023)
VHL Alliance in the US “International Clinical Care Centers”
Contacts at University Health Network (Toronto General and Sick Children’s Hospitals)
VHL awareness/fundraising events
Special lighting: CN Tower (4 years); Niagara Falls (2 years); also in past with landmarks in Calgary, Edmonton and Peace Bridge (Ontario) Fund raisers: Scotiabank Toronto Waterfront Marathon (“Walk for VHL”, 3 years); other events and raffles; over 2000 BLOGS to email group since 2016; and Online groups (Facebook) and individual support (chat, text, email, or phone) since 2016. Blogs
VHL Canada
Henry Seo, Peer Support Volunteer and Chair (Toronto, Ontario)
Paula McNally, Grand Falls, New Brunswick
Newest directors TBA
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Also, there was a short story of a VHL family in this month's Maclean's, August 2023! Awesome opportunity for Awareness including outreach to Canada! Photo
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