Nos actions

Dear PAB Members

We invite you to join our next Meeting on Feb 2, 2026 at 16h00 (CEST)
The meeting will be dedicated to the Presentation of our candidates

* Each candidate presents 4 slides max / 8 minutes.
* Q&A session with candidates, + Vote

Steering Committee candidates Final order proposal

1. Daniele Palumbo
2. Zhana Chokheli
3. Sergios Dmitriev
4. Rui Barbosa Guedes
5. Tanja Zdolšek Draksler
6. Sue Routledge
7. Dorica Dan

Best wishes Anne
________________________________________________________________________________
Réunion Microsoft Teams
Rejoindre : https://teams.microsoft.com/meet/37619242236828?p=tsphSZsvswdrrlMhM6
Numéro de réunion : 376 192 422 368 28
Code secret : xp6bo7JQ
________________________________
Besoin d'aide ? | Référence système
Pour les organisateurs : Options de réunion
________________________________________________________________________________

Anne Hugon, Project Manager & Coordination Officer
EU Cheffe de Projets ERN ITHACA & CLAD IDFs
Expert clinical research and innovation
Clinical Genetics Department - APHP Robert Debré University Hospital,75019 Paris
+33 (0) 6 68 96 91 07 / +33 1 40 03 23 39 anne.hugon@aphp.fr

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https://ern-ithaca.eu

Dear all,

We would like to invite you to our upcoming E+A Community Meeting, where we will review progress across working groups and together shape the next steps for our collaborative efforts.

Proposed Agenda

1. Welcome & Brief Overview of the Structure
   A short recap of how the E+A framework is organised and how each part contributes to our shared goals.

2. Updates from Working Groups (WG1 – WG2 – WG3)
   Including updates from subgroups.
   Special focus:

   • The ongoing Very Important Survey

   • Progress and next steps related to the ketogenic diet activities

3. Call to Action
   How to join the working groups, contribute to activities, and engage with upcoming tasks.

4. Social Network Development
   What the association would like to see on shared platforms, expectations, and next communications milestones.

5. Discussion: Moving Forward
   Joint reflections on priorities for early 2026 and how to improve collaboration.

6. AOB / Member Proposals
   Open floor for members to raise topics, questions, or new ideas.

We warmly encourage all to attend, share insights, and help us build a stronger and more connected E+A community.

Looking forward to seeing you there!

Best regards,

Vedrana Bibić,
On behalf of E+ Alliance team (Complex and Rare Epilepsy Alliance) 

Join Zoom Meeting
https://us02web.zoom.us/j/84009807097?pwd=Mq8rVLWF74RZvbs0XIWFREZyI8s861.1

Meeting ID: 840 0980 7097
Passcode: 994795

Dear PAB Members

We invite you to join our next Meeting on Mondays from 16h-17h CEST

Agenda

* What is happening in RDD 2026 at National level

We would appreciate receiving 4 short initiative presentations (5 minutes each) describing one planned activity.

* Activities back from Bergen
* Presentation of Chairs
* Plan for 2026
* Discussion

Kind Regards
Anne

________________________________________________________________________________
Réunion Microsoft Teams
Rejoindre : https://teams.microsoft.com/meet/36427499350482?p=08B9VX6zSmVkaRIZrg
Numéro de réunion : 364 274 993 504 82
Code secret : bL2R2sC7
________________________________
Besoin d'aide ? | Référence système
Pour les organisateurs : Options de réunion
________________________________________________________________________________

Anne Hugon, Project Manager & Coordination Officer
EU Cheffe de Projets ERN ITHACA & CLAD IDFs
Expert clinical research and innovation
Clinical Genetics Department - APHP Robert Debré University Hospital,75019 Paris
+33 (0) 6 68 96 91 07 / +33 1 40 03 23 39 anne.hugon@aphp.fr

[cid:image001.png@01DC8AEA.07558DE0]
https://ern-ithaca.eu