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

There is a packed conference program on Friday and Saturday where families can learn of the latest developments and strategies for working with people affected by CdLS and hear of health treatments and risks long before the information becomes published. Many of the professionals will be on hand to hold individual private consultations with families to help assess issues affecting the person with CdLS.The event can start with individual meetings for different countries run by their national professional directors and will give a summary of the SAC meeting in their own language.All main sessions will have simultaneous translation for those languages for which there are 20 or more persons attending. We are also looking for language volunteers to help with interpretation for doctor consults.We are planning a series of trips out suitable for all ages for the siblings and young people attending the conference. And in the evenings there is plenty of fun for all the family at our planned social events.

02/08/2019

09:30 : 10:00
Bienvenue et ouverture de la conférence. La conférence est rendue possible par les groupes familiaux allemands et néerlandais. Et la municipalité de Bad Neuenahr-Ahrweiler souhaite la bienvenue à tous les visiteurs et leur exprime son hospitalité.
Jürgen Kegel
Father of Christian
Gerritjan Koekkoek
Father of Rai
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
Antonie Kline
MD, Director of Pediatric Genetics, Harvey Institute for Human Genetics, Greater Baltimore Medical Center, Baltimore, USA
10:45 : 11:15
Break
11:15 : 12:00
Une introduction approfondie au syndrome de Cornelia de Lange. Nos experts présenteront;
  • Problème de santé important: plus particulièrement les problèmes d’alimentation et le reflux,
  • Développement et comportement
Nous sommes très fiers de la publication en 2018-2019 de la première déclaration du Consensus international sur le syndrome de Cornelia de Lange. tous les présentateurs de cette conférence ont activement travaillé à cette déclaration. Maintenant, vous pouvez poser les questions, mais aussi savoir où il n’y a pas encore de "consensus" ...
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
Douleur/ NeurologieSouvent, les personnes atteintes de CdLS montrent clairement des signes de douleur. Mais en raison du manque de compétences de communication appropriée, il est difficile de localiser la douleur, de comprendre ce que cette personne tente de communiquer. Et si le premier niveau de communication a échoué, il se peut que vous voyiez un comportement avec lequel vous avez du mal à composer.Cette session traite de la compréhension des signaux de la douleur et de la raison pour laquelle la communication est parfois influencée par la neurologie: "Comment les sens d’une personne CDLS interagissent-ils avec le cerveau et que savons-nous de cette interaction entre les sens (Voir, Déguster, Sensation, Sentir, Entendre) et le cerveau.
Chris Oliver
PhD, Professor of Neurodevelopmental Disorders, Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK
Peter Martin
Angelo Selicorni
MD, Director of Pediatric Unit at ASST Lariana Como, Italy
14:15 : 15:00
Le comportement qui est montré chez les personnes atteintes de CdLS peut être déroutant, mais une fois compris, il peut vous fournir une mine d'informations. Cela peut être une autre forme de communication qui, une fois comprise, en dit autant que nous le faisons normalement avec des mots.Qu'est-ce que le comportement compulsif? Quels sont les signes d'un comportement stéréotypé? Quelles autres formes de comportement voyons-nous? Et cela change-t-il lorsqu'un enfant se développe en un adolescent, d'un jeune adulte à l'autre?Apprenons et discutons-en
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.
Anne-Marie Bisgaard
Eline van Rooij

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
Father of Christian
Gerritjan Koekkoek
Father of Rai
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
Angelo Selicorni
MD, Director of Pediatric Unit at ASST Lariana Como, Italy
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
Anne-Marie Bisgaard
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.
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
Jenny Rollo
Bernadette Dalingwater
Eline van Rooij
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?
Gerritjan Koekkoek
Father of Rai
Bernadette Dalingwater
Jenny Rollo
16:01 : 16:30
We will summarize the past two days. We will thank the families, volunteers and experts for the time and effort invested inner event We will celebrate some special awards We hope to announce the next conference We will close the conference and prepare for the Gala Diner
Gerritjan Koekkoek
Father of Rai
Jürgen Kegel
Father of Christian
Feliciano Ramos

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