Picture of GerritjanKoekkoek

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

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.