The association « X-traordinaire » represents individuals and families affected by mental disabilities linked to the X-chromosome.
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 |
Marie-Odile Claudel, sister and mother of an X-traordinary child’ |
Treasurer |
Henri Bulliot, grand-father and father of an x-traordinary child |
Member |
Chantal Bulliot, grand-mother and mother of an x-traordinary child |
Member |
Hélène de Compiègne |
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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