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Summary notes (and comments) of some VHL awareness initiatives from VHL Alliance (VHLA) Facebook fan page:

Annually, May is trumpeted by the VHL Alliance as VHL Awareness Month with fundraisers of awareness and virtual messages and events in the US.

  • Based on 1/36,000 estimate, there’s 10, 000 Americans with VHL (and 1000 Canadians).
  • They have excellent global social media reach. (Also has mandate is to facilitate US local/state communities and hospital “centres”.)
  • 2.3 million contributed to research by VHLA. (Currently have million-dollar budget and were established 1995.)
  • major advance in Renal Cell Carcinoma drug/pharmaceutical company clinical trial (for VHL disease related kidney cancer)
  • Support calls facilitated by a life coach who is also a VHL patient/caregiver.
  • (Also noticed “Canadian VHL Alliance” in Pickering Ontario mentioned on website. There’s no financial connection with VHLA. We at VHL Canada, no connections, tried to ask them to share some money with us – no response)
  • (We, VHL Canada, also have an Amazon option for

Share your feedback, experiences and tips.

-Henry Seo

Help us cover out-of-pocket expenses
🍁 VHL Canada facilitates peer support for people coping with VHL in Canada

Copyright © 2019

CRA BN: 800804676RR0001
Our mailing address is:
VHL Canada
2938 Dundas Street West
PO Box 70510
Toronto, ON
M6P 4E7

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VHL Canada · 2938 Dundas Street West, PO Box 70510 · Toronto, On M6P 4E7 · Canada

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