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 01/08/2019

08:00 : 08:05
Welcome to the professionals from German and Netherlands presidents.
Gerritjan Koekkoek

Father of Rai

Chairman of CdLs Netherlands & Belgium

Jürgen Kegel
08:05 : 08:30
Introduction on the relevance, consistency and yield of an interdisciplinary approach in Cornelia de Lange syndrome
Gabriele Gillessen-Kaesbach
08:30 : 10:15
1. Genetic causes and molecular mechanisms in CdLS (part I)
  1. Genetic causes and molecular mechanisms in CdLS (part II)
  2. How can animal and cellular models help us understand Cornelia de Lange syndrome?

Questions
Frank Kaiser
Professor of Functional Genetics and Human Genetics, Institute of Human Genetics, University of Lübeck, Germany
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
MD, Director of Pediatric Unit at ASST Lariana Como, Italy
Antonie Kline
MD, Director of Pediatric Genetics, Harvey Institute for Human Genetics, Greater Baltimore Medical Center, Baltimore, USA
11:45 : 12:45
Lunch
12:45 : 13:30
Questions
Sylvia huisman
MD PhD, Amsterdam University Medical Center, Amsterdam, and Prinsenstichting, Purmerend, The Netherlands.
13:30 : 15:00
1. Adaptive behaviour, social and emotional development
  1. Exploring and experiencing the world; communication and sensory processing difficulties
  2. 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
MSc, Autism Team Northern-Netherlands, Jonx Department of Youth Mental Health and Autism, of Lentis Psychiatric Institute, Groningen, The Netherlands.
Chris Oliver
PhD, 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
Professor of Functional Genetics and Human Genetics, Institute of Human Genetics, University of Lübeck, Germany
Sylvia huisman
MD PhD, Amsterdam University Medical Center, Amsterdam, and Prinsenstichting, Purmerend, The Netherlands.
16:30 : 18:00
Sylvia huisman
MD PhD, Amsterdam University Medical Center, Amsterdam, and Prinsenstichting, Purmerend, The Netherlands.
Gabriele Gillessen-Kaesbach
Frank Kaiser
Professor of Functional Genetics and Human Genetics, Institute of Human Genetics, University of Lübeck, Germany

About the website contents

All of the information contained within these questions and answers is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know, contact see below.