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New on the site - by Frédérique 09/08/2008 · 22:06

Welcome to Jules, two and half years.

Please go and read on the left column and click on his name to know more about him.


Italian study - by Frédérique 07/08/2008 · 21:36


Holidays - by Frédérique 03/08/2008 · 16:30

Back from holidays...

 

Too short for the parents but apparently enough for Camille, glad to find again her habits at home.

Anyway, she liked to change place almost every day without any problem. Idem for food and everyday schedule.

 

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"it was beginning very bad those holidays...

Doing the dishes...

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... holidays school work...

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Huge waves...

 

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... So, I said STOP ! and thought

 

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that made me laugh.

and helped parents to understand I just wanted to do nothing...

 

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playing on the beach...

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meeting other children...

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Going to shows... (here " fantasia" of Moulay Bousselham).

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Analysing rubish collect with my brother...

 

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and meet old acquaintance like Zaineb and her family in Casablanca.

Finally, I had to fight but I spent quite good holidays".


New files - by Frédérique 11/07/2008 · 09:22


Deletion 22q13 Unique leaflet Translation - by Frédérique 04/07/2008 · 20:50

A french translation of Rarechromo.org/Unique leaflet about 22q13 deletion is actually available on the website. désormais disponible sur le site.

Thanks to Costa de Beauregard foundation that did the translation and thanks to Geneviève Mattéi who validated it.

Read it on the right column.


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22q13 deletion - Phelan-McDermid syndrome
To inquire Getting informations Medical research
  • • 

To consult

= Elever un enfant porteur de la délétion 22q13 (en anglais)

= Elever un enfant porteur de la délétion 22q13 (traduction française)

= Sites d'apprentissage de la propreté (en anglais)

= Relation entre gêne Prosap 2 et délétion 22q13 (en anglais)

= Relation entre gêne Prosap 2 et délétion 22q13 (en français)

= Relation entre gêne Shank 3 et autisme - Institut Pasteur- (en français)

= Etude sur 33 patients : relation entre la taille de la délétion et le développement/comportement (Me Mattéi) (en français)

= La douleur sur internet (en français)

= Vivre avec une maladie rare en France - Guide Orphanet (en français)

= Guide Unapéi - Vivre avec un enfant différent -

= Plaquette UNIQUE sur la délétion 22q13 (en français)

= Article "genetics in medecine" sur la relation entre autisme et anomalies génétiques (en français)


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