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.

Scientific Symposium

There is a one-day conference on Thursday looking at the challenges facing professionals working with somebody affected by a condition like CdLS where the well-documented problems of autism are complicated by a myriad of medical issues. We hope that by addressing some of those issues and looking at an holistic approach to the treatment and management of people affected we will be able to develop a model of care that can be shared internationally. This will help people into the future.Show detail program of the symposium

01/08/2019

08:00 : 08:05

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

08:05 : 08:30

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

https://www.cdlsworld.org/xwiki/bin/download/XWiki/GabrieleGillessen/gillessenKaesbach.jpg?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Gabriele Gillessen-Kaesbach
Prof. Dr. Med. President from the "Universität zu Lübeck" (University of 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

https://www.cdlsworld.org/xwiki/bin/download/XWiki/FrankKaiser/Frank_Kaiser.jpg?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Frank Kaiser
Professor of Functional Genetics and Human Genetics, Institute of Human Genetics, University of Lübeck, Germany
https://www.cdlsworld.org/xwiki/bin/download/XWiki/MattDeardorf/thumbnail_Matt%20Deardorff.jpg?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Matt Deardorff
MD PhD, Associate Medical Director, Roberts Individualized Medical Genetics Center at Children's Hospital of Philadelphia, USA
https://www.cdlsworld.org/xwiki/bin/download/XWiki/DavidFitzpatrick/thumbnail_David%20Fitzpatrick-2.jpg?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
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

https://www.cdlsworld.org/xwiki/bin/download/XWiki/AngeloSelicorni/thumbnail_Angelo%20Selicorni.jpg?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Angelo Selicorni
MD, Director of Pediatric Unit at ASST Lariana Como, Italy
11:45 : 12:45
Lunch
12:45 : 13:30
https://www.cdlsworld.org/xwiki/bin/view/CdLSWorld/conferences/2019/schedule/blocks/scientific17">With the Body in Mind, a somatic approach to self-injurious behavior

Questions  

https://www.cdlsworld.org/xwiki/bin/download/XWiki/SylviaHuisman/sylvia.png?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Sylvia huisman
MD PhD, Amsterdam University Medical Center, Amsterdam, and Prinsenstichting, Purmerend, The Netherlands.
13:30 : 15:00
https://www.cdlsworld.org/xwiki/bin/view/CdLSWorld/conferences/2019/schedule/blocks/scientific19">Understanding development and behaviour in Cornelia de Lange Syndrome
  1. Adaptive behaviour, social and emotional development
  2. Exploring and experiencing the world; sensory processing difficulties
  3. The behavioural and cognitive phenotype

Questions

https://www.cdlsworld.org/xwiki/bin/download/XWiki/IngevanBalkom/balkom.png?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Inge van Balkom
MD PhD, Autism Team Northern-Netherlands, Jonx Department of Youth Mental Health and Autism, of Lentis Psychiatric Institute, Groningen, The Netherlands
https://www.cdlsworld.org/xwiki/bin/download/XWiki/PaulMulder/Profielfoto%20%281%29.jpg?width=400&keepAspectRatio=true&rev=1.2" class="schedule-item-speaker-foto">
Paul Mulder
MSc, Autism Team Northern-Netherlands, Jonx Department of Youth Mental Health and Autism, of Lentis Psychiatric Institute, Groningen, The Netherlands.
https://www.cdlsworld.org/xwiki/bin/download/XWiki/ChrisOliver/oliver.png?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
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
https://www.cdlsworld.org/xwiki/bin/download/XWiki/FrankKaiser/Frank_Kaiser.jpg?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Frank Kaiser
Professor of Functional Genetics and Human Genetics, Institute of Human Genetics, University of Lübeck, Germany
https://www.cdlsworld.org/xwiki/bin/download/XWiki/SylviaHuisman/sylvia.png?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Sylvia huisman
MD PhD, Amsterdam University Medical Center, Amsterdam, and Prinsenstichting, Purmerend, The Netherlands.
16:30 : 18:00
https://www.cdlsworld.org/xwiki/bin/download/XWiki/SylviaHuisman/sylvia.png?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Sylvia huisman
MD PhD, Amsterdam University Medical Center, Amsterdam, and Prinsenstichting, Purmerend, The Netherlands.
https://www.cdlsworld.org/xwiki/bin/download/XWiki/GabrieleGillessen/gillessenKaesbach.jpg?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Gabriele Gillessen-Kaesbach
Prof. Dr. Med. President from the "Universität zu Lübeck" (University of Lübeck)
https://www.cdlsworld.org/xwiki/bin/download/XWiki/FrankKaiser/Frank_Kaiser.jpg?width=400&keepAspectRatio=true&rev=1.1" class="schedule-item-speaker-foto">
Frank Kaiser
Professor of Functional Genetics and Human Genetics, Institute of Human Genetics, University of Lübeck, Germany

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Created by Gerritjan Koekkoek on 2019/02/14 11:13

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