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Living with Rett syndrome
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The benchmarks

Short readings to prepare your questions, at your own pace.

France · content in French

About this content

Documentary guidance to check with the relevant professionals.

Communiquer, même sans parole

Cartes, classeur, contacteurs, regard : ouvrir des possibilités.

Report incorrect information — Communiquer, même sans parole · General information

Landmark: Communiquer, même sans parole · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

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Du besoin à l’essai du matériel

Une liste d’équipements est un point de départ, pas une ordonnance.

Report incorrect information — Du besoin à l’essai du matériel · General information

Landmark: Du besoin à l’essai du matériel · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

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Préparer un échange avec la MDPH

Décrire un besoin, pas seulement demander un objet.

Report incorrect information — Préparer un échange avec la MDPH · General information

Landmark: Préparer un échange avec la MDPH · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

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Préparer ses observations pour l’équipe

Mettre en mots une inquiétude sans chercher un diagnostic dans l’app.

Report incorrect information — Préparer ses observations pour l’équipe · General information

Landmark: Préparer ses observations pour l’équipe · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

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Les loisirs sont aussi un sujet de rendez-vous

Ne pas limiter le projet aux soins et aux démarches.

Report incorrect information — Les loisirs sont aussi un sujet de rendez-vous · General information

Landmark: Les loisirs sont aussi un sujet de rendez-vous · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

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Renouvellement : la référence change la réponse

Ne pas confondre durée de vie, garantie et nouvelle prise en charge.

Report incorrect information — Renouvellement : la référence change la réponse · General information

Landmark: Renouvellement : la référence change la réponse · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

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Manger et boire : partir des consignes de l’équipe

L’installation et les accessoires ne remplacent pas le bilan.

Report incorrect information — Manger et boire : partir des consignes de l’équipe · General information

Landmark: Manger et boire : partir des consignes de l’équipe · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

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Comprendre Rett, sans tout apprendre d’un coup

Quelques repères pour entrer dans le sujet, à votre rythme.

Report incorrect information — Comprendre Rett, sans tout apprendre d’un coup · General information

Landmark: Comprendre Rett, sans tout apprendre d’un coup · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

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Un lit adapté ne résume pas le sommeil

Préparer le point sur le couchage et les nuits.

Report incorrect information — Un lit adapté ne résume pas le sommeil · General information

Landmark: Un lit adapté ne résume pas le sommeil · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

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Une douche plus simple, une intimité préservée

Penser au confort de la personne et aux gestes des aidants.

Report incorrect information — Une douche plus simple, une intimité préservée · General information

Landmark: Une douche plus simple, une intimité préservée · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

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Quand les transferts deviennent difficiles

Des sujets à aborder avant de s’épuiser à porter.

Report incorrect information — Quand les transferts deviennent difficiles · General information

Landmark: Quand les transferts deviennent difficiles · General information

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Véhicule adapté : poser les bonnes questions

Distinguer la voiture, les adaptations et la sécurité du passager.

Report incorrect information — Véhicule adapté : poser les bonnes questions · General information

Landmark: Véhicule adapté : poser les bonnes questions · General information

Do not provide names, contact details, medical or personal data. Describe only the documentary information to be corrected. This form is neither an emergency service nor a request for medical advice.

Plain text only. Only your message and the documentary reference above are sent, without account or attachment. The text remains in this form in the event of an error, without saving or automatic sending.

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