At the Canadian VHL Alliance, we are committed to bringing you the latest updates and research with all things concerning Von Hippel-Lindau (VHL) disease. That is why we dedicated a day just for learning all things about VHL. The goal of VHL day was to educate healthcare professionals, caregivers, and VHL warriors to learn more about Belzutifan, endocrine manifestations, accessing caring for VHL, genetics and family planning, mental health support, and more!
To help us with this special day, we invited numerous guest speakers who generously gave us their time and expertise to speak on their own personal experience about what they see in the clinic, and how healthcare professionals can do better for VHL warriors.
If you missed out on VHL day this year, don’t worry! Here’s a brief overview of the day:
- We kicked off with some lovely opening remarks by our very CVHLA Chair, Jess Pearson
- Dr. Maryam Soleimani, Medical Oncologists, highlighted the groundbreaking research done on Belzutifan, the first drug approved for systemic therapy in VHL
- Our discussion panelists Dr. Maryam Soleimani, Dr. Dominick Bosse, and Nicky Harder (VHL warrior) shared their thoughts on accessing care for VHL and the progress that’s been made in clinics in Canada
- Renee Hofstedter and Alexandra Volenik, Genetic Counsellors, discussed how VHL warriors can still raise a family through the help of genetic testing and family planning options
- And finally, we wrapped up the day with mental health and peer connect session facilitated by Julia Parrott, bringing more VHL warriors together
Checkout the videos of some of these amazing discussions to relive the day: [link to access VHL day videos]
Thank you to our speakers, attendees, and organizers for making VHL day a success.
As always, the Canadian VHL Alliance is here to support you on your journey, feel seen, and to gain the feeling of control and power back. And finally, a spotlight quote from VHL day 2024: “For people to trust us with their lives is tremendous and to look after patients who have had to do so much advocacy for themselves and are so motivated, it’s really inspiring.” – Dr. Maryam Soleimani