News
2022 VHLA International Medical Symposium
Toronto Ontario - Nov. 3-5, 2022
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Hold the date - The virtual Symposium will bring together researchers and medical professionals from all over the globe to discuss the latest in VHL research and treatment. The 2022 Symposium is held in partnership with the Canadian VHL Alliance and the Toronto VHL Network and will feature a keynote address by celebrated researcher Marston Linehan, MD of the National Institutes of Health and a presentation by Nobel laureate Gregg L. Semenza, MD, PhD.
If you are interested in helping our CVHLA Host Committee please let us know!
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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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Update and Google Poll on
Merck's MK-6482
Treatment for Clear Cell Renal Cell Carcinoma (ccRCC)
Merck's MK-6482
The US based VHL Alliance is spreading the work about the Merck MK-6482 treatment for Clear Cell Renal Cell Carcinoma (ccRCC) and other VHL related lesions.
In the link below, the conclusion stated is: "MK-6482 showed promising efficacy and tolerability in patients with VHL-associated ccRCC and responses in other VHL-related lesions. These data support further investigation of MK-6482 in VHL disease"
Link to the an overview of MK-6482.
Click here for more information on the phase 3 trial
Google Poll
The US based VHL Alliance have developed a google poll to collect international data to provide the patients’ voice supporting MK-6482 approval by both the FDA and EMA for ALL VHL patients, and not just for the kidney.
The poll is at: https://forms.gle/ApNJF7i5e5FqFiGs5.
We will share the results as the VHLA gives us updates.
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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