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The Association

 
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The Committee

Laurent Ecochard Laurent Ecochard, who himself has Moebius Syndrome, has been president of the Moebius France Association since May 2005. He represents the Association as a member of the « Alliance des Maladies Rares » and « Eurordis ». He also has contacts with other Moebius organisations throughout the world. Laurent is responsible for organising a scientific conference which takes place alongside the AGM as well as for defining the agenda for the AGM itself. He currently lives in the « Haut Rhin » in eastern France.


Christine Brand Christine Brandis the mother of Anaïs, a young teenagert with Moebius Syndrome. Christine has been Vice President of the Association since May 2007 and has been actively involved in a number of areas including creating a Moebius press kit, organising the 2009 AGM, and helping raise funds for the Association. She is currently preparing an organisation kit to help volunteer members in organising future AGMs. Christine lives in Danjoutin, in the « Territoire de Belfort » in eastern France.


Ludivine Haran Ludivine Haranis the mother of the lovely Julie, a young girl with Moebius Syndrome. Ludivine has been secretary of the Association since May 2009. As well as coordinating all mailings to members and supporters, Ludivine is also responsbiel for the publication of our annual newsletter. She lives in Evian les Bains in Haute Savoie, where she is currently organising the 2011 AGM.


Déborah Fuhrer Déborah Fuhrer, also with Moebius Syndrome, is mother to a beautiful little girl, Méline. Deborah, aka « Sally », has been deputy secretary of the Association since May 2007, and is in charge of writing the Association\'s annual report. Along with her partner, Deborah has also set up a discussion forum for members and supporters, « moebius-france.com ». The family lives near Paris.


Jean-Luc Trotzier Jean-Luc Trotzier, aka « Mr Audi » is a further committee member with Moebius Syndrome. He has been treasurer of the Association since May 2009. When not travelling the country, Jean-Luc lives in the « Bas-Rhin » in eastern France.




Nicole Rassaby Nicole Rassaby also has a young son with Moebius Syndrome, François Elie. Nicole has been deputy treasurer of the Association since May 2009, and along with her family, has also organised a number of fund-raising ventures for the Association.




Sébastien Urfer Sébastien Urfer is the grandfather of a little girl with Moebius Syndrome and has been administror of the Association\'s website since May 2005, reading and replying to e-mail correspondence sent by visitors or our internet site, moebius-france.org


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