Fragile X Monday November 28 th , 2016 Introduction Round table - - - PowerPoint PPT Presentation

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Fragile X Monday November 28 th , 2016 Introduction Round table - - - PowerPoint PPT Presentation

Dec 17, 2022 102 likes •236 views

Scientific Advisory Board Fragile X Monday November 28 th , 2016 Introduction Round table - intro Simply using your native language Feel free to intervene at all time this is your meeting Agenda MoU for research project

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SLIDE 1

Scientific Advisory Board Fragile X

Monday November 28th, 2016

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SLIDE 2

Introduction

  • Round table - intro
  • Simply using your native language
  • Feel free to intervene at all time – this is your

meeting

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SLIDE 3

Agenda

  • MoU for research project – final
  • X’Presse on health: thank you & outstanding topics
  • Research update
  • Survey the quality of special education in Federation Wallonie-

Bruxelles

  • Debrief from our Fragile X week-end & conference (Oct 8-9)
  • Round table and AOB
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SLIDE 4

MoU for Research Projects

  • Now formally approved by board of Inclusion absl
  • Will be used for all new research projects
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SLIDE 5

X’Presse – Special ‘health”

Subject Author Statut 1er angle de vue : problèmes de développement Autisme et X fragile Pr Magerotte Published Déficit langagier Pr Majerus Published Expression orale, logopédie Mme Déom Published Psychomotricité Mme de Woot Published 2e angle de vue : problèmes de santé Problèmes dentaires Pr Olszewski No reply Otites à répétition Dr Storme Published Problèmes cardiaques Pr Dembour

Published

Visite chez le médecin, dentiste,

  • phtalmologue …

Mme Delheusy

  • u Mme Theys

No reply Pieds plats, orthopédie Dr Reynders No reply Déglutition chez le nourrisson Mme Déom Outstanding Alimentation, non satiété ? No author yet Epilepsie Pr Nassogne Published Médicaments Pr Nassogne Published 3e angle de vue : perspectives d’avenir Essais cliniques Dr Van Dijck Published 4e angle de vue : syndromes associés FXTAS Pr Garraux No reply FXPOI Pr Young (Paris) Outstanding

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SLIDE 6

Ongoing Research & Clinical Trial

  • Ganaxolone (Pr. Kooy)
  • Premutation (Pr. Verellen-Dumoulin)
  • Attention/focus (Pr. Majerus)
  • DVD with research papers from 15th International Fragile X

conference (NFXF)

  • Longitudinal study (MSc. University Geneva)
  • http://archive-ouverte.unige.ch/unige:88008
  • Genetic science (CRISP-CAS-9)
  • Other research
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SLIDE 7

Survey on special education (FWB)

  • Initiated by XFB and to be led by Inclusion asbl (not just for FX)
  • Internet-based, sent to a target group (intellectual disability),

anonymous, mostly multiple-choice (easier analysis)

  • Background questions incl. age, school history
  • Facts and satisfaction on School, PIA, Bulletin, CPMS, speech

therapist & OT support, afterschool-care, lunch, school trips, transport

  • Child abuse evaluation
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SLIDE 8

Fragile X week-end & conference

8-9 October 2016; Château Cousin; Rochefort

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SLIDE 9

Latest News to share?

Round table

Next meeting (proposed date):

Monday May 29th, 2017

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SLIDE 10

Thank you!

Your personal commitment makes the difference and gives hope to families

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SLIDE 11

Association X fragile Belgique

  • Website:

www.x-fragile.be

  • Facebook:

https://www.facebook.com/AssociationXFragileBelgique

  • Contact for SAB:

François Rycx – francois.rycx@bt.com – 0496 57 35 19

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Werkgroep Fragiel X

  • New website:

www.fragiel.be