Program

  


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.

Show detail program (still under construction)

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

The conference Area

Bad Neuenahr-Ahrweiler

For a long time people have travelled to Bad NeuenahrAhrweiler during summer to take advantage of all this region has to offer. For different reasons: some want to improve their health. Gourmets and culinary lovers love the good...

 life with fine wines and great restaurants. The active guests appreciate the wide range of sporting activities that Waldkletterpark, Rotweinwanderweg, Ahrsteig and Nordic Fitness Park have to offer. Culture fans expand their thirst for knowledge in the Roman villa, within the Ahrweiler city wall or in the cultural offerings in the spa park. In addition, numerous parks, walking paths along the Ahrufers, swimming pools or sidewalk cafés invite you to relax. Holiday mood is everywhere.

In the middle of the Ahr valley, between forests and vineyards, lies the town of Bad Neuenahr-Ahrweiler. Cultural diversity is particularly evident in architectural structures. Thus, in Ahrweiler, the influence and rule of the Romans is reflected. Buildings such as the city gates or the historic city walls bear witness to the long-gone era. The district of Bad Neuenahr, on the other hand, is a witness to the glamorous imperial era, whose influence is still recognizable today in the most diverse buildings and streets and has lost nothing of its elegance. Varied entertainment, state-of-the-art quality standards, historic buildings amidst the picturesque landscape of the Ahr Valley - this is Bad Neuenahr-Ahrweiler.

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.
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Welcome and Opening

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.
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CdLS Introduction

A thorough introduction to Cornelia de Lange Syndrome. Our experts will introduce;
  • Pregancy/Birth,
  • 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...
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CdLS Introduction (Continued)

A thorough introduction to Cornelia de Lange Syndrome. Our experts will introduce;
  • Pregancy/Birth,
  • 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...

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Pain and Where is it coming from?

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.
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Behavior, what can we see?

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
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Communication

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
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Relationships and Hygiene

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.
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Introduction for second day

We hope all have had a great evening and good night rest. The second day will be very interactive.
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Reflux

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
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Other problems with the digestion of food and intake of water

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.
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Sensory Processing / regulation

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

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Growing up, walk, learn and live

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
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What about US...

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?

About the website contents

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