AHCFE annual meeting 2021

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 joning the executive board

Nienke Lentze
Bridget Vranckx
Katherine Behl
Abesheck 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 syncrome

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 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
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