greetingscdlsDE

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
1.Vorsitzender
Arbeitskreis Cornelia-de-Lange-Syndrom e.V.