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 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

Multidisciplinary & Parental guidance • Best practice from SAB • Recommendations for our members ? • Best centers for Fragile X

Plan Individuel d’Apprentissage • Awareness? Experience sharing ? • Value add of professionals, per category • Best practice from SAB • Recommendations for our members ?

Ongoing Research & Clinical Trial • Ganaxolone (Pr. Kooy) • Premutation (Pr. Verellen-Dumoulin) • Attention/focus (Pr. Majerus) • Other research

X Presse – Special ‘health” • 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?) • 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)

MoU for Research Projects • MoU and Instructions: comments, feedback, best practices ?

Fragile X week-end & conference 8-9 October 2016; Château Cousin; Rochefort

Latest News to share? Round table Next meeting (proposed date): Monday November 28 th , 2016

Thank you! Your personal commitment makes the difference and gives hope to families

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

Werkgroep Fragiel X • New website: www.fragiel.be