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.
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VHL Alliance Family day Saturday October 24th, 2020 Presentations (all presentations are in this link, specific titles are noted below)
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Merck 6482 treatment update is in the first presentation: 2020 Annual Meeting- Salt Lake City Clinical Trial Update Benjamin Maughan, MD, PharmD. See below for more background.
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29 minute presentation, 61 patients in the study, results are quite encouraging
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Next steps are discussed at 25 minute mark – FDA approval is being pursued
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For a bit of background, here is a press release on Merck 6482 from July 2020.
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Other notable presentations
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2020 Annual Meeting- Salt Lake City Screening Guidelines Othon Iliopoulos, MD, PhD
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2020 Annual Meeting- Salt Lake City Screening Adherence in Adolescents and Emerging Adults Samantha Greenberg, MS, CGC
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the International VHL Medical Symposium Oct. 29th – 31st. This event featured a keynote speech from 2019 Medical Nobel Prize winner, William G. Kaelin Jr.,
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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
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Why is a Regular Ophthalmological Exam Critical in VHL
Brian Maddow, MD: University of South Florida -
Endocrinological Advances in the Management of VHL
John B. Tourtelot, MD: Moffitt Cancer Center, Florida -
Liver and Pancreatic Manifestations of VHL
Mokenge P. Malafa, MD: Moffitt Cancer Center, Florida -
Neurological Manifestations of VHL
Arnold Etame, MD, PhD: Moffitt Cancer Center, Florida -
The Genetics of VHL
Xia Wang, MD, PhD: Moffitt Cancer Center, Florida -
Personalized Medicine for VHL
Howard McLeod, PharmD: Moffitt Cancer Center, Florida -
Caring for Young Patients with VHL
Damon Reed, MD: Moffitt Cancer Center, Florida -
A Clinical and Research Perspective
Eric Jonasch, MD: MD Anderson Cancer Center