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Over 2 maanden is de prachtige familie bijeenkomst in Europa!

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Dear families and participants of the 10th World Conference!

We are very pleased to welcome you in Bad Neuenahr-Ahrweiler at the Dorint-Hotel.

When our son, Rai, was born in November 1999, he was diagnosed with Cornelia de Lange syndrome. The internet was just emerging and the information about SCdL was horrible. There was just one address with hopeful (full of hope!) information; the SCdL Foundation in the USA. We sent them a letter for support. This was such a great experience to find support when most needed, from people who knew what was needed. They informed us about a group of parents in our home country, The Netherlands. At that time there was no information in Dutch (our language) about the Cornelia de Lange syndrome on the Internet.

Life with Rai took our family life on a rollercoaster! Frightening experiences, but also experiences of immense pleasure. One experience that will always stay with us was our first meeting at a family gathering. As a new family we were warmly greeted by a lovely, friendly girl with SCdL. She was immediately drawn to Rai and was full of joy. Rianne; you and your parents are still in our heart.

Of course we joined the family group and have visited the family gatherings each year ever since. We believe, and experienced, that being with others makes you so much stronger. And hearing the stories, sharing our best practices, finding the experts that are recommended by these parents, having a listening ear when you ask to people that 'just get it'. 

Rai suffered from Reflux very badly. We decided that Rai and myself would travel to Italy to find support. In Italy there was the world conference of that year. We were greeted by Ulla. A warm welcome by Angelo Selicorni. He recommended that I should talk to Dr. Lugani from Milan. This 1:1 consultation turned out to be a very important milestone for Rai. He never suffered from Reflux or side-effects of the medication after we followed his advice.

It shows clearly what I hope you, as a visitor to this conference, will experience; meeting beautiful people like Rianna and her parents, her brothers and her sisters, finding support from the best experts in the world and experiencing the strength of the SCdL World community.

I always say, we all know something !
Together we know everything!

I wish us all an unforgettable 10th World Conference 2019 in Bad Neuenahr-Ahrweiler with many experiences and experiences which we all take home to make our lives a little easier.


Gerritjan Koekkoek
Chairman and supporter of CdLS World
Vereniging Cornelia de Lange syndroom

Picture of JurgenKegel

Dear families and participants of the 10th World Conference!

We are very pleased to welcome you in Bad Neuenahr-Ahrweiler at the Dorint-Hotel.

When our son, Christian, was born in November 1990, he was diagnosed with Cornelia de Lange syndrome. We could not do anything with this diagnosis at that time and wanted to know more about it. So we tried to make contacts. We asked the Gentische Beratungsstelle Heidelberg, the VDK, the Lebenshilfe and the Elternzeitschrift for contact addresses. At that time there was no information about the Cornelia de Lange syndrome on the Internet.

We just wanted to know what was coming, how other families in their lives were dealing with this diagnosis. We got to know some parents with children, with different developments, who met us often and exchanged with others and gave newly affected families first information. It was a special feeling to feel that we are not alone with our problems. 

The group of parents became bigger and bigger. On 28 May 1994, we agreed that we would found a self-help association for parents together. We agreed on the association name Arbeitskreis Cornelia-de-lange-Syndrom e.V.. It is now 25 years ago. Much has happened in this time. There were beautiful events, but also less beautiful ones. The most beautiful are and have always been the joint meetings. Friendships arose which still exist today. Today after 25 years we are in the beautiful Bad Neuenahr-Ahrweiler in the Dorint Parkhotel at the Dahliengarten. Not just like that, no, but to a very special meeting with families from many countries and many experts.

Exactly according to our motto "Together," Together we, the association Cornelia de Lange syndroom Netherlands & Belgium and the working group Cornelia-de-Lange-Syndrom e.V. Germany, have planned this year's world conference over many hours. Families and experts share their experiences and develop new ideas in order to gain insights and to be able to deal better with difficult situations in everyday life. We want to celebrate together and experience friendship, security and openness.

I wish us all an unforgettable 10th World Conference 2019 in Bad Neuenahr-Ahrweiler with many experiences and experiences which we all take home to make our lives a little easier.


Jürgen Kegel
Arbeitskreis Cornelia-de-Lange-Syndrom e.V.

Picture of MaluDreyer

G r u ß w o r t

Dear participants,

On behalf of Rheinland-Pfalz I extend heartfelt greetings to participants in the 10th World Conference Cornelia-de-Lange Syndrome in Bad Neuenahr- Ahrweiler. I am delighted that the World Conference is being held in Rheinland-Pfalz and hope that, in addition to the family conference and the symposium, you will have the opportunity to enjoy the hospitality of Rheinland-Pfalz. 

The motto of the 10th World Conference is "Together", because together we can overcome more challenges and achieve more. The 'arbeitskreis' Cornelia-de-Lange-Syndrom e.V. (Germany) organised the conference together with the 'vereniging' Cornelia de Lange syndroom (Netherlands and Belgium) in order to enable people with Cornelia de Lange syndrome and families to exchange experiences with others, but also to get in touch with experts and to inform themselves about the latest developments in science, therapies and medicine. Last but not least, the World Conference will be a celebration for the children, which they can experience together with their families.

I would like to take this opportunity to congratulate the Arbeitskreis Cornelia-de-Lange-Syndrom e.V. on its 25th anniversary. The members of the working group have made a decisive contribution to increasing the quality of life of those affected and their relatives. I would like to take this opportunity to express my sincere thanks to all the active and former club members for their contribution to this demanding and important work. 

My special thanks go to all the supporters and sponsors as well as the volunteers, who have come forward, to make this conference a success. I wish you all a successful world conference and many productive and useful meetings!


Malu Dreyer
Prime Minister of Rheinland-Pfalz

Picture of GuidoOrthen

Welcome to Bad Neuenahr-Ahrweiler!

Dear participants,

I would like to welcome you and your families to the 10th World Conference Cornelia-de-Lange-Syndrome in the Dorint Parkhotel Bad Neuenahr! 

We are very happy that this event will take place for the first time in Bad Neuenahr-Ahrweiler, in the middle of the Ahr valley. We are sure that you will enjoy the location with all that it has to offer. 

Bad Neuenahr-Ahrweiler is an excellent meeting place and I am sure it will be conducive to a productive and worthwhile Conference. As the original spa centre Bad Neuenahr forms the core of today’s Bad Neuenahr-Ahrweiler Health Competence Centre.
With various neo-baroque style buildings, extensive parks and numerous health-promoting offers and events, the spa is today a unique place for well-being, relaxation and joie de vivre.
At the World Conference, leading experts will provide comprehensive information on current medical challenges and scientific backgrounds at the symposium. Within the framework of the subsequent family conference, there will be the opportunity to exchange views on treatment methods, developments and strategies in dealing with affected people. 

In addition to medical aspects, the event will focus above all on one thing - humanity and the love of life. Through your voluntary work and your commitment within the framework of the CdLS World Conference, you all send an important signal to our society. Together you will make a decisive contribution to raising awareness of issues such as inclusion and integration across national and religious borders. Because only when all people feel seen and recognized can appreciation and respect for human life be experienced.

I wish all participants of the 10th World Conference Cornelia-de-Lange-Syndrome an informative and insightful symposium and family conference as well as an exciting and relaxing stay in Bad Neuenahr-Ahrweiler. 


Guido Orthen
Mayor of the district town
Bad Neuenahr-Ahrweiler

Picture of DavidAxtell

Dear Families, Professionals, Carers and all other Participants in any capacity

Welcome to the 10th CdLS World Conference in Bad Neuenahr-Ahrweiler. The reason for the over extended greeting is simply to offer an inclusive hand of welcome to everybody. Whether you are reading this as one of the families, one of our dedicated professionals, a carer for an affected person or someone working for the organisers, translators and other staff who will run this event, ALL are very welcome. As the Mayor has already said, the theme for this conference is “Together” and a very apt theme it is.

One of the simplest aims of conference, is to bring people together. We share not only crucial information, informative experiences but we also share the joys, trials and burdens of living with people affected by CdLS. An old English adage says, "a trouble shared is a trouble halved!"

It is also one of the mainstays of the World Federation of CdLS Support Groups that we are stronger “Together,” can achieve more “Together.” CdLS is rare, accounts for a tiny fraction of the population. As individual national support groups representing maybe dozens, maybe hundreds of CdLS people, we can seem like a very insignificant section of the community. Bring those groups together and we are representing thousands across the world. Connect us with other rare disease groups through our links with organisations like Eurordis and we are now a significant proportion of the population. Do you see the power of “Together?”

Likewise, the Scientific Advisory Council (SAC) is a panel of experts on all of the medical and other therapeutic specialities that concern CdLS. The SAC brings all of that knowledge “Together.” These two bodies have created the partnership between families and scientists which brings us all together, here at conference. It was working together that gave us the newly published Global Treatment Guidelines for CDLS - available on this website!

So welcome to this, the 10th CdLS World Conference. I look forward to meeting all of you, hearing your stories and joining you in learning more - Together!

I hope you get the most out of this shared experience


David Axtell
World Federation of CdLS Support Groups

Gerritjan Koekkoek

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Created by Gerritjan Koekkoek on 2019/05/29 14:06

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