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On behalf of patient representatives, the Foundation For Rare Diseases (FFRD) is organizing the first Birk-Barel mini-symposium, that will be held online on the 3d of December 2021, from 4pm to 7pm (Paris hour). The goal of this meeting will be to give a comprehensive update of the research activities on the Birk-Barel syndrome and to highlight the themes that need some support, stimulation and/or deployment.

Participation is free but registration is mandatory.

Please register here (before 19 of November if you want to present your work) :

Connexion details will be sent to registered attendees few days before the meeting.

Programme to come

We look forward to the participation of : 

  • Margot Cousin – USA – Mayo Clinic 
  • Guillaume and Julie de Beaucoudrey – France – Patient representatives
  • Matthew Deardorff – USA –  Children’s Hospital Los Angeles
  • Anne-Sophie Diependale – France – Caen Hospital 
  • Melissa Kelley – USA – Patient representatives 
  • Florian Lesage – France – Inserm 
  • Suzanne Schweiger – Germany – Mainz University
  • Emma Veale – UK – Universities of Greenwich and Kent
  • Ulrich Zechner – Germany  Senckenberg Zentrum für Humangenetik


Date :
3 décembre 2021
Heure :
16 h 00 min - 19 h 00 min
Catégorie d’Évènement:


Fondation Maladies Rares
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