Minutes from the AHCFE annual meeting 6. November 2021
AHCFE annual meeting
Report from president
• There has been very low activity for AHCF in 2021
• 2 meetings with pharmaceutical companies wanting to do a trial and get participation from families.
• Keeping contact with Eurordis but no meetings this year
• A few meetings with various families around the world
Finance report:
Income 0
Cost 0
Bank account
Euro 1.976
Isk 37.972
Total Euro 2.229
AHC Association of Iceland pays for the AHCFE.EU website and has done so from 2013 as a donation towards the federation
Executive board
Sigurður Hólmar Jóhannesson – President and Treasurer
Tom O´Brian
Filippo Franchini
Albert Villamala
Albert wants to step down
Nominations toward joining the executive board
Nienke Lentze
Bridget Vranckx
Katherine Behl
Abhishek Behl
The proposed was agreed up on so the new members are
Other items
Katherine informed about Epicare information sheet for parents and for doctors
Patient journey – 4 leaflets
AHCIA needs to be re-booted as it has been laying low for a while
AHC is classed as a rare epilepsy syndrome
We are looking to get a grant fund for a meeting next – 10 year conference celebrating 10 year from the discovery on the gene
Any suggestions for this meeting are welcome – please email Katherine or Bridget before the 2nd of December
bridget.vranckx@aesha.org
katherine.behl@gmail.com
How do we share our data?
What are we going to get out of the cooperation?
What do we need to avoid?
Learn from mistakes others have made in the past?
We should be seeking advice from others who have been through this process before
Healthcare should be provided should there be any problems after the trial
We need a lot of information to put together to be able to navigate this as a group
The mission statement for the federation
Key goals
Tsveta – would be good to have an overview of how many families are in each country
And how many in total – to have on the website and update once a year
Enrah did this a few years back
AHCFE Facebook page – Update
We should set up a board meeting before the end of this month to start the work
– Minutes Sigurdur Holmar Johannesson