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I’ve made some observations on how VHL awareness has been advanced by the VHL Alliance or VHLA. What does “awareness” mean to you? *
The VHLA...

  • formed in the US in 1993 -first known as VHL Family Alliance: “At a time preceding the Internet, meeting or speaking with another person or family members affected by VHL was difficult and unlikely…”
  • inspired many International "alliances"e.g. Canadians in 1996, so they are "directly or indirectly connected to approximately 90% of patients and families with a known diagnosis of VHL, world-wide...”
  • Handbook (2012 edition) was translated into" Spanish, French, Greek, Dutch, Chinese, Japanese, Hindi, and Arabic”
  • became “the preeminent resource [e.g. authoritative information in handbook, website, research reviews] for patients, caregivers, researchers, and the medical community”
  • added "awareness" to their mission statement in 2014: The VHL Alliance is dedicated to research, education, and support to improve awareness, diagnosis, treatment, and quality of life for those affected by VHL
  • created and marketed Curing Cancer through VHL vision statement in 2020-22 to emphasize the significance of VHL gene cancer research and the Nobel Prize 2019. “The cure for VHL is in the genes” was the previous tagline
  • increased fundraising awareness and activities (employed Director of Development 2011). They currently benefit from “strong financial stability with sufficient funds to expand programmatic opportunities [e.g. patient and family support, qualified staff, and research grants].”
  • Programs (e.g. social-emotional support and education); Volunteers (patients; family; and doctors, healthcare professionals and researchers in e.g. research and clinical councils;) and Staff (executive, development and health directors and administrative assistant) focus primarily on US clients or “markets”:
    • Patients
    • Caregivers (includes family)
    • Medical Community
    • Pharmaceutical Industry
    • Imaging Industry, and
    • General Community
  • shared their logo (identity/branding) and updated it slightly in 2013-18: “… The two shades of blue emphasize the word VHL. In addition, the four dots in the symbol are now in the lighter blue shade, helping to emphasize the multiple stakeholders which include: patients/caregivers/friends, healthcare professionals, researchers, and the general public.”
  • went “from a grassroots organization to one with a more professional environment.” (Executive, Development, and health Directors hired) And now, from “adolescence” into “adulthood”  
  • provides comprehensive products/services for the US and world (e.g. social media, online support, May awareness campaign, US Clinical Care Center voluntary model)
  • holds “an annual Family Meeting geared to educating patients, families, and caregivers with the goal of empowering them to become active partners in clinical care. Each year the meeting is held in a different part of the country [US] as a way to make it accessible to different geographic areas”
  • commits a portion of annual revenue for competitive research program grants which is very symbolic. In total, they have given $2.3 million to research
  • assists with clinical trials for VHL drug treatment (mainly in US): Peloton Therapeutics, Awareness Facebook group, Merck and FDA [Also see update at]
  • created MyVHL: Patient Natural History Study (formally called Cancer in Our Genes International Patient Databank) - presently only in English
  • holds a biennial International VHL Medical/Research Symposia in collaboration with leading VHL research institutions “designed to bring

* based on my experience as a patient, former chair of Canadian VHL Alliance, 2013-15, and past collaborator with VHL Alliance in the US. I think “VHL awareness” often overlaps with: VHL disease, VHL gene, hope and international patient support groups like VHL Canada
*quotations from VHL Alliance Strategic Plans 2020-22 and 2013-15
*Bolds and italics added by me

VHL Canada
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🍁 VHL Canada facilitates peer support for people coping with VHL in Canada
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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