TOGETHER


  


10th World Conference Cornelia de Lange Syndrome 2019

Together experts and families search for answers, find solutions and share best practice. Our understanding of CdLS is increased and families are better able to deal with challenges of raising their children.Together we strengthen friendship, in an emotionally safe environment. Parents are supported and encouraged to share concerns and and celebrate triumphs.

Wetenschappelijk symposium

Het doel van deze eendaagse bijeenkomst op donderdag 1 augustus is de uitdagingen te bespreken waarmee de professionals bij hun werk met mensen met CdLS geconfronteerd worden. Een syndroom waarbij het begrijpen van het gedrag wordt bemoeilijkt door een breed scala aan medische aspecten. We hopen dat we door een uitvoerige bespreking van de problemen een voorbeeldmodel kunnen ontwikkelen dat internationaal gebruikt kan worden en toekomstige betrokkenen kan helpen. Op deze bijeenkomst worden ook de lang verwachte richtlijnen voor het Cornelia de Lange Syndroom besproken.

01/08/2019

08:00 : 08:05

Welcome to the professionals by the German and Netherlands chairs of the board.

Gerritjan Koekkoek
Father of Rai
Jürgen Kegel
Father of Christian
08:05 : 08:30

Introduction on the relevance, consistency and yield of an interdisciplinary approach in Cornelia de Lange syndrome

Gabriele Gillessen-Kaesbach
Prof. Dr. Med. Präsidentin der Universität zu Lübeck
08:30 : 10:15
  1. Genetic causes and molecular mechanisms in CdLS (part I)
  2. Genetic causes and molecular mechanisms in CdLS (part II)
  3. How can animal and cellular models help us understand Cornelia de Lange syndrome?

Questions

Frank Kaiser
Matt Deardorff
MD PhD, Associate Medical Director, Roberts Individualized Medical Genetics Center at Children's Hospital of Philadelphia, USA
David FitzPatrick
Professor of Paediatric Genetics, MRC Human Genetics Unit, Edinburgh, UK
10:15 : 10:30
coffee break
10:30 : 11:45

From Head to Toe and Everything in Between

  1. Clinical follow-up of Cornelia de Lange syndrome: from transversal to specific issues
  2. Clinical Findings due to each of the 7 Genes

Questions

Angelo Selicorni
AntonieKline
11:45 : 12:45
Lunch
13:30 : 15:00
  1. Adaptive behaviour, social and emotional development
  2. Exploring and experiencing the world; sensory processing difficulties
  3. The behavioural and cognitive phenotype

Questions

Inge van Balkom
MD PhD, Autism Team Northern-Netherlands, Jonx Department of Youth Mental Health and Autism, of Lentis Psychiatric Institute, Groningen, The Netherlands
Paul Mulder
Chris Oliver
Professor of Neurodevelopmental Disorders, Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK
15:15 : 16:30

interactive discussion, including;

  • future strategies and projects, 
  • hypotheses,
  • funding ideas and sources
Frank Kaiser
Sylvia Huisman
16:30 : 18:00
Sylvia Huisman
Gabriele Gillessen-Kaesbach
Prof. Dr. Med. Präsidentin der Universität zu Lübeck
Frank Kaiser

About the website contents

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