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VHL Patient Survey Results
In December 2022 CVHL conducted an online survey of patients and caregivers to assess the challenges VHL patients and caregivers face because of the disease.  This information was utilized in the February 2023 CADTH and INESSS submissions supporting provincial and territorial funding of Belzutifan (Welireg).
123 patients and caregivers participated in the survey.
 VHL Patient Survey Results.

Past Annual Conferences

VHL Alliance Virtual Annual Family Weekend, October 23-25th 2020


Our partners in the United States, the VHL Alliance, held their Annual Family Weekend October 23 -25.


VHL Alliance Annual Family Meeting Saturday, October 20th 2017

The conference was held at the Moffitt Cancer Center in Tampa Florida, here is a recap of the subjects covered and the presenters: 

       John B. Tourtelot, MD: Moffitt Cancer Center, Florida

VHL Alliance Annual Family Meeting Saturday, September 24, 2016


Held by US VHL Alliance in Los Angeles, California, USA

RPB Auditorium, Jules Stein Eye Institute David Geffen School of Medicine 100 Stein Plaza, Westwood, CA

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