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Scientific Advisory Board Fragile X
Monday May 30th, 2016
Introduction
- Round table - intro
- Simply using your native language
- Feel free to intervene at all time – this is your
Fragile X Monday May 30 th , 2016 Introduction Round table - intro - - PowerPoint PPT Presentation
Fragile X Monday May 30 th , 2016 Introduction Round table - intro - - PowerPoint PPT Presentation
Scientific Advisory Board Fragile X Monday May 30 th , 2016 Introduction Round table - intro Simply using your native language Feel free to intervene at all time this is your meeting Agenda How to encourage multidisciplinary
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Agenda
- How to encourage multidisciplinary support & parental guidance
- PIA (Plan Individuel d’Apprentissage): improve participation of self-
advocates, parents, teachers, doctors and all professionals
- Ongoing research & clinical trials
- X-Press on health challenges – part 2
- MoU for research project: presentation, comments & agreement
- Fragile X week-end & conference (October 8-9)
- Round Table - AOB
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Multidisciplinary & Parental guidance
- Best practice from SAB
- Recommendations for our members ?
- Best centers for Fragile X
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Plan Individuel d’Apprentissage
- Awareness? Experience sharing ?
- Value add of professionals, per category
- Best practice from SAB
- Recommendations for our members ?
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Ongoing Research & Clinical Trial
- Ganaxolone (Pr. Kooy)
- Premutation (Pr. Verellen-Dumoulin)
- Attention/focus (Pr. Majerus)
- Other research
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X Presse – Special ‘health”
- Autisme et X fragile – Pr Magerotte
- Problèmes dentaires – Pr. Olszewski
- Visite chez le médecin, dentiste,… - Mme Delheusy ou Theys
- Pieds plats, orthopédie - Dr Reynders
- Déglutition chez le nourrisson – Mme Deom
- Alimentation, problème de non satiété - ?
- FXTAS – Pr. Garraux
- FXPOI – Pr. Young (Paris)
- Review & validate list of topics proposed; anything missing?
- When a lead is proposed, can we confirm or suggest alternatives
?
- When no lead is proposed, identifying potential lead
- Confirming input from each lead contributor, writing article
and/or reviewing/validating pre-written summary (where to find base material?)
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MoU for Research Projects
- MoU and Instructions: comments, feedback, best practices ?
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Fragile X week-end & conference
8-9 October 2016; Château Cousin; Rochefort
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Latest News to share?
Round table
Next meeting (proposed date):
Monday November 28th, 2016
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Thank you!
Your personal commitment makes the difference and gives hope to families
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Association X fragile Belgique
- Website:
www.x-fragile.be
- Facebook:
https://www.facebook.com/AssociationXFragile Belgique
- Contact for SAB:
François Rycx – francois.rycx@bt.com – 0496 57 35 19
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Werkgroep Fragiel X
- New website: