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.

Family conference day 1 02/08/2019

09:30 : 10:00
Welcome and the opening of the conference. The conference is made possible by the family groups of Germany and the Netherlands. And the municipality of Bad Neuenahr-Ahrweiler would like to welcome all visitors and express the hospitality.
Jürgen Kegel
Gerritjan Koekkoek

Father of Rai

Chairman of CdLs Netherlands & Belgium

Gabriele Gillessen-Kaesbach
10:00 : 10:45
A thorough introduction to Cornelia de Lange Syndrome. Our experts will introduce;
  • Pregancy/Birth,
  • and what about the genes...
We are very proud that in 2018 there has been a milestone publication of the first international Consensus statement about Cornelia de Lange Syndrome; all presenters on this conference have actively worked on this statement. Now you can ask the questions, but also learn about where there is 'no consensus' yet...
Sylvia huisman
MD PhD, Amsterdam University Medical Center, Amsterdam, and Prinsenstichting, Purmerend, The Netherlands.
Frank Kaiser
Professor of Functional Genetics and Human Genetics, Institute of Human Genetics, University of Lübeck, Germany
10:45 : 11:15
Break
11:15 : 12:00
A thorough introduction to Cornelia de Lange Syndrome. Our experts will introduce;
  • Important Health Issue's: most notably Feeding Problems and the Reflux,
  • Development and Behavior
We are very proud that in 2018-2019 there has been a milestone publication of the first international Consensus statement about Cornelia de Lange Syndrome; all presenters on this conference have actively worked on this statement. Now you can ask the questions, but also learn about where there is 'no consensus' yet...
David FitzPatrick
Professor of Paediatric Genetics, MRC Human Genetics Unit, Edinburgh, UK
Chris Oliver
PhD, Professor of Neurodevelopmental Disorders, Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK
12:00 : 13:30
Lunch
13:30 : 14:15
Pain / NeurologyOften people with CdLS clearly show signs of pain. But because of lack of appropriate communication skills it is difficult to locate the pain, understand what that person is trying to communicate. And if the first level of communication failed it might be that you see behavior that you find difficult to deal with.This session is about understanding signals of Pain and understanding why the communication is sometimes influenced by neurology, 'how do the senses of a cdls person interact with the brains and what do we know about this interaction between senses (Seeing, Tasting, Feeling, Smelling, Hearing) and the brains.
Chris Oliver
PhD, Professor of Neurodevelopmental Disorders, Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK
Paul Mulder
MSc, Autism Team Northern-Netherlands, Jonx Department of Youth Mental Health and Autism, of Lentis Psychiatric Institute, Groningen, The Netherlands.
Peter Martin
14:15 : 15:00
The behavior that is shown with people with CdLS can be confusing, but when understood can give you a wealth of information. It can be another form of communication that, when understood, tells as much as we normally do with words.What is compulsive behavior? What are stereotypical behavior signs? What other forms of behavior do we see. And is it changing when a child develops in a teenager, a young adult to adult?Learn and discuss about it
Chris Oliver
PhD, Professor of Neurodevelopmental Disorders, Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK
Paul Mulder
MSc, Autism Team Northern-Netherlands, Jonx Department of Youth Mental Health and Autism, of Lentis Psychiatric Institute, Groningen, The Netherlands.
Inge van Balkom
MD PhD, Autism Team Northern-Netherlands, Jonx Department of Youth Mental Health and Autism, of Lentis Psychiatric Institute, Groningen, The Netherlands
Marleen Janssen
Professor at the Department of Special Needs Education at the University of Groningen in the Netherlands.
15:00 : 15:30
Afternoon break
15:30 : 16:15
We as people are social beings. Our Cornelia's are for sure. They are very interested in their social environment. And like ourselves they get a lot of joy when they are understood and people help them in what they want to achieve. But the expressive communication is a challenge.How can we understand what they are trying to say. What does it mean. Can they learn to communicate in ways others can better understand. This session is about what we can do and what can be achieved in this field of communication
Marleen Janssen
Professor at the Department of Special Needs Education at the University of Groningen in the Netherlands.
Paul Mulder
MSc, Autism Team Northern-Netherlands, Jonx Department of Youth Mental Health and Autism, of Lentis Psychiatric Institute, Groningen, The Netherlands.
Inge van Balkom
MD PhD, 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
16:15 : 17:00
Having relationships with family members, friends, fellow students, animals,... It certainly enriches your world.What can we expect in this area? And what about Boy- or Girl-friend. Sexuality? And what about hygiene coming with body and hormone cycles?Talking about hygiene, going to hairdresser, taking care of healthy teeth. Basically they all relate to being able and ready for relationships.
Jenny Rollo
Jolanta Wierzba
Antonie Kline
MD, Director of Pediatric Genetics, Harvey Institute for Human Genetics, Greater Baltimore Medical Center, Baltimore, USA
Douglas Clemens

Family conference day 2 03/08/2019

09:30 : 09:45
We hope all have had a great evening and good night rest. The second day will be very interactive.
Jürgen Kegel
Gerritjan Koekkoek

Father of Rai

Chairman of CdLs Netherlands & Belgium

Sylvia huisman
MD PhD, Amsterdam University Medical Center, Amsterdam, and Prinsenstichting, Purmerend, The Netherlands.
09:45 : 10:30
What is this nasty pain causing problem. How can we best treat the problem. How does it affect daily life and what can be the effects (usually not good!), but rest assured; it can be treated quite effectively once you diagnose that there is Reflux.Solving the pain for your Cornelia will be one of the biggest gains in your quest for happiness and at least 10 smiles a day.This session is recommended for all young families as being well informed about reflux is very important
Peter Gillett
Antonie Kline
MD, Director of Pediatric Genetics, Harvey Institute for Human Genetics, Greater Baltimore Medical Center, Baltimore, USA
Angelo Selicorni
MD, Director of Pediatric Unit at ASST Lariana Como, Italy
Feliciano Ramos
10:30 : 11:15
Eating healthy food and drinking are essential for a pleasant life, so this is true as well for Cornelia's.But the genes can have created some hurdles to be aware of. We often talk about the 'tube' from mouth to .... (When you go to the toilet) Cornelia's can have issues in this tube; from the beginning to the very end.Swallowing, Drinking ... Why does the tummy seem to hurt, and why is the stool not ok?These and many other topics about the digestive system will be discussed. And again; we learned so much that most of these issues can be dealt with. Not the least by tips from other parents.
Peter Gillett
Antonie Kline
MD, Director of Pediatric Genetics, Harvey Institute for Human Genetics, Greater Baltimore Medical Center, Baltimore, USA
Angelo Selicorni
MD, Director of Pediatric Unit at ASST Lariana Como, Italy
Armand Bottani
11:15 : 11:45
Morning break
11:45 : 12:30
Keeping your body healthy requires protection from your environment. How do Cornelia's process signals they receive about danger? How do they keep their body warm.When all this functions well you feel secure and in general is thought of as Well-being. How can we understand and take care of this Well-Being
Paul Mulder
MSc, Autism Team Northern-Netherlands, Jonx Department of Youth Mental Health and Autism, of Lentis Psychiatric Institute, Groningen, The Netherlands.
Peter Martin
Jolanta Wierzba
Anne-Marie Bisgaard
12:30 : 14:00
Lunch
14:00 : 14:45
A Cornelia develop, he or she will move around, learn by visiting a school or care center. At a certain age there need to be a fulfilling day program. Working or maybe just spreading love and and allow the society to show its best in including people that are different in daily life.Every child has a right to be teached the skills required for the best possible quality of life. Let's see what we have here..And with so much activity we all need a place to live. It might come a time that the nesting period is over and our Cornelia needs to fly out: Adolescence and transition to a new living environment
Marleen Janssen
Professor at the Department of Special Needs Education at the University of Groningen in the Netherlands.
Jenny Rollo
Chris Oliver
PhD, Professor of Neurodevelopmental Disorders, Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK
Bernadette Dalingwater
14:45 : 15:15
Afternoon break
15:15 : 16:00
What about us, the parents, the brothers, the sisters, the caretakers?It sure is a worth the effort to strengthen ourselves, our relationships by claiming time for yourself. And it is not 'weak' or 'wrong' to cry, to feel overwhelmed. But there are possibilities to 'refuel', have a special vacation of a quality so special...What have 'the elders' done to prevent their life from collapsing? What errors did they make that we can avoid? What lessons can they recommend?
Andrée Benz
Monique Kroezen
Gerritjan Koekkoek

Father of Rai

Chairman of CdLs Netherlands & Belgium

Bernadette Dalingwater

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.