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UID:7@vhl-europa.org
DTSTART;TZID=Europe/Amsterdam;VALUE=DATE:20241018
DTEND;TZID=Europe/Amsterdam;VALUE=DATE:20241019
DTSTAMP:20241125T134741Z
URL:https://vhl-europa.org/events/vhl-europa-minutes-general-assembly-2024
 -october-18th/
SUMMARY:VHL Europa Minutes General Assembly 2024 October 18th
DESCRIPTION:Participants : Rachel (NL)\, Birthe (GE)\, Margherita (IT)\, Fr
 ancesco (IT)\, Dan (DK)\, Amandine (FR)\, Attila (HU)\, Vibeke (DK)\nOn-li
 ne : Sabine (FR)\, Martin (GE)\, Gerhard (GE)\, Ronald (NL).\n\nHotel Ra
 fael was sponsoring the meeting room – Thank you.\n\nLast year’s minut
 es from the 2023 General Assembly were unanimously approved.\n\nRachel gav
 e a short description of the situation in EU (see the presentation)\, and 
 highlights of the issues faced.\nRachel has been invited by different orga
 nisations to talk about VHL and other rare cancers. She has very kindly do
 nated the fees to VHL Europa – Thank you.\n\nWebsite:\nVHL-NL has arrang
 ed a grant to up-date our VHL Europa website\, it is very important that c
 ertain 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.|\nIt will be possible to upload videos. Starting in Jan
 uary 2025 we will also generate regular newletters\, for email distributio
 n\, as well as for the webpage.\n\nFinance:\n2023 was the first year with 
 the new approach for membership fees. The income is as before changes of t
 he fees.\nFees and other income will be saved for the Young Adults VHL mee
 ting planned for 2026.\nIt was agreed that the fee\, which now scaled base
 d 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).\nThe financial report was approved unanimously.\n\nYoung A
 dults (YA) VHL Meeting 2026:\nGerhard will talk to Spain. Attila asked int
 o YA\, Gerhard will send feedback from this year to Hungary. Perhaps Hunga
 ry will host YA in 2028?\n\nAccess to systemic treatment for VHL:\nBelzuti
 fan is currently the only systemic treatment for VHL\, although there are 
 other HIF-2 inhibitors being developed. In October 2023 Merck/MSD submitte
 d a regulatory approval application to EMA and there have been many ongoin
 g discussions working towards an approval for VHL disease. We have been as
 sured by MSD that they are doing everything possible to provide the patien
 ts who need systemic therapy the most access to belzutifan through a compa
 ssionate use program. The program does not yet exist\, but will be rolled 
 out across 15 EU countries as soon as possible.\n\nBrainstorm on actions:\
 nThe coming year will be a very important year\, we should use the time to
 :\n\n 	Train and teach the doctors about VHL systemic therapy\n 	Make the 
 countries ready for compassionate use – many countries will have to deve
 lop protocols.\n 	Highlight the health economics\, the benefit of systemic
  treatment for VHL\, including patient experience data.\n 	VHL Europa make
  noise\, get help from Eurordis.\n\nCan videos with “Belzutifan experts
 ” be made and uploaded to the website?\nConsider making webinars as a ce
 ntral source of education.\n\nGeneral Assembly:\nEvery 2nd year the GA wil
 l be held on-line\, thus 2025 will be online. In 2026 we will consider a p
 hysical meeting.\n\nElection:\nThe board is elected for 3 years\, thus for
  not election this year.\nAuditors: Francesco and Athena (Gerhard will ask
  her)\n\nAction:\nFeed-back from YA -24 send the HU Gerhard\nAuditor Athen
 a Gerhard
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