Participants : Rachel (NL), Birthe (GE), Margherita (IT), Francesco (IT), Dan (DK), Amandine (FR), Attila (HU), Vibeke (DK)
On-line : Sabine (FR), Martin (GE), Gerhard (GE), Ronald (NL).
Hotel Rafael was sponsoring the meeting room – Thank you.
Last year’s minutes from the 2023 General Assembly were unanimously approved.
Rachel gave a short description of the situation in EU (see the presentation), and highlights of the issues faced.
Rachel has been invited by different organisations to talk about VHL and other rare cancers. She has very kindly donated the fees to VHL Europa – Thank you.
Website:
VHL-NL has arranged a grant to up-date our VHL Europa website, it is very important that certain sectors are included on the page, this is required in order to be able to ask for funding. Rachel showed a Demo-version. It will be live end of November 2024.|
It will be possible to upload videos. Starting in January 2025 we will also generate regular newletters, for email distribution, as well as for the webpage.
Finance:
2023 was the first year with the new approach for membership fees. The income is as before changes of the fees.
Fees and other income will be saved for the Young Adults VHL meeting planned for 2026.
It was agreed that the fee, which now scaled based on each national group’s income, will be updated every 3rd year, and the next up-date will be in 2025 (one year before the current board is up for election).
The financial report was approved unanimously.
Young Adults (YA) VHL Meeting 2026:
Gerhard will talk to Spain. Attila asked into YA, Gerhard will send feedback from this year to Hungary. Perhaps Hungary will host YA in 2028?
Access to systemic treatment for VHL:
Belzutifan is currently the only systemic treatment for VHL, although there are other HIF-2 inhibitors being developed. In October 2023 Merck/MSD submitted a regulatory approval application to EMA and there have been many ongoing discussions working towards an approval for VHL disease. We have been assured by MSD that they are doing everything possible to provide the patients who need systemic therapy the most access to belzutifan through a compassionate use program. The program does not yet exist, but will be rolled out across 15 EU countries as soon as possible.
Brainstorm on actions:
The coming year will be a very important year, we should use the time to:
- Train and teach the doctors about VHL systemic therapy
- Make the countries ready for compassionate use – many countries will have to develop protocols.
- Highlight the health economics, the benefit of systemic treatment for VHL, including patient experience data.
- VHL Europa make noise, get help from Eurordis.
Can videos with “Belzutifan experts” be made and uploaded to the website?
Consider making webinars as a central source of education.
General Assembly:
Every 2nd year the GA will be held on-line, thus 2025 will be online. In 2026 we will consider a physical meeting.
Election:
The board is elected for 3 years, thus for not election this year.
Auditors: Francesco and Athena (Gerhard will ask her)
Action:
Feed-back from YA -24 send the HU Gerhard
Auditor Athena Gerhard