We are also listed as resources/affiliations

• Canadian Cancer Society

• Wellspring Cancer Support Toronto, Patient, Caregiver and Family Support Websites

• Orphanet

• RQMO (Regroupement québécois des maladies orphelines - Quebec Coalition of Orphan Diseases)

• Canada Helps

• Montreal Neurological Institute-Hospital (The Neuro Patient Resources)

• Canadian Institutes of Health Research representative directly contacted us to verify and list us on Orphanet-Canada

Canadian VHL Alliance

• Another patient group registered in Canada (family member story 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 Canada contact@vhlcan.ca

• Henry Seo, MSW, RSW (Registered Social Worker), Peer Support Volunteer and Chair (Toronto, Ontario)

• PM, R.N. Registered Nurse, Grand Falls, New Brunswick

• More directors TBA

VHL awareness/fundraising events - photos

• 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 Awareness: National Links • Affiliations• Outreach• Fundraising