The association « X-traordinaire » represents individuals and families affected by mental disabilities linked to the X-chromosome.

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NB : It does not represent individuals or families affected by the Fragile-x syndrome, which is already represented by two support associations.

NB : But it does include individuals and families who are awaiting a formal clinical diagnosis and for whom medical professionals have already evoked the suspicion of this genetic cause.

Our goals
Managing Council members
Medical and scientific council
Contact us
Our goals

Promote and improve support and services from medical authorities, public services, and private and professional organisations with a particular focus on research and education; rehabilitation and social and/or professional integration of disabled people; support and compensation; creation of facilities and adapted services.

The vocation of our association is to :

- Promote the understanding of mental processes (neuropsychological and behavioural) with the aim of enhancing the autonomy and esteem of mentally disabled individuals .

– communicate effective information to individuals and external organisations facing these disabilities

- help to alleviate the distress linked to the consequences of the disability in accordance with the particular demands of individuals

. Managing council members

Chairman

Olivier de Compiègne, father of 2 X-traordinary children

Vice-chairman

Céline Vernet, sister, aunt and mother of an X-traordinary child

Secretary

Cécile Arléry

Treasurer

Heré Wright

Member

Chantal Bulliot, grand-mother and mother of an x-traordinary child

Member

Henri Bulliot, grand-father and father of an x-traordinary child

Member

Marie-Odile Claudel , Renpenning Syndrome

Member

Jean-Marie and Mady Gauthier

Member

Carine Schneider

Member

Christophe Berthod

Member

Karine Fages

Medical and scientific council

Dr Vincent des Portes

Pediatrics professor, neurologist-pediatrician and coordinator of the reference center on x-linked mental deficiencies

Dr Christophe Loïc Gérard

Hospital practitioner, psychiatrist and rehabilitating doctor

Dr Delphine Héron

Hospital practitioner in genetics, pediatrician

Dr Daniel Gérard

Pedopsychiatre in the reference center on x-linked mental deficiencies

Dr Jamel Chelly

Genetics professor (option biology), Paris V Inserm

Dr Aurore Curie

Pediatrician, thesis on the functional MRSI (magnetic resonance spectroscopic imaging) of people presenting a x-linked mental retardation

Contact us

e- mail: contact@xtraordinaire.org

Telephone : + 33 1 41 10 59 57 (voicemail)
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