Welcome and Opening

  


Welcome and Opening

Welcome and opening of the conference by Jürgen Kegel, Gerritjan Koekkoek and Prof. Dr. Gillessen-Kaesbach. The conference is made possible by the family groups of Germany and the Netherlands. The municipality of Bad Neuenahr-Ahrweiler would like to welcome all visitors and express their hospitality. 

Moderators for today will be Dr. Armand Bottani and Dr. Sylvia Huisman. They will guide us through the day and make sure that the interactive sections run smoothly.

Meet our experts

We have done our best to invite those from around the world to give you the insights you hope for. Professors, teachers, experienced parents and siblings will discuss the topics for the best quality of life possible. Our motto; TOGETHER!

Sylvia huisman

Sylvia huisman

MD PhD, Amsterdam University Medical Center, Amsterdam, and Prinsenstichting, Purmerend, The Netherlands.

Sylvia is a clinical supervisor of the specialist training program at Prinsenstichting and a teacher at the Erasmus University Medical Centre, Rotterdam. She did a PhD on Self-injurious Behaviour in Cornelia de Lange syndrome

She works at Prinsenstichting, at the Amsterdam Expertise Centre for Neurodevelopmental Disorders (including Cornelia de Lange syndrome) at the Amsterdam University Medical Centre, and at the Centre for Consultancy and Expertise (CCE). 

She is a Physician for Individuals with Intellectual Disabilities (AVG). She received her specialist training at the Prinsenstichting and at the Erasmus University Medical Centre, Rotterdam. 

Medical Director of the Dutch CdLS group and President of the Scientific Advisory Council of the CdLS World Federation.

Gabriele Gillessen-Kaesbach

Gabriele Gillessen-Kaesbach

Prof. Dr. Med.
President from the "Universität zu Lübeck" (University of Lübeck)

Armand Bottani

Armand Bottani

MD, Board-certified in Medical Genetics
Service of Genetics
Institut Central des Hôpitaux - Hôpital du Valais, Sion, Switzerland

First trained as a paediatrician before specializing in medical genetics in Zürich and Geneva. Since his beginnings in this field, he always has had a special interest for rare disorders and the delineation of syndromes. From 1992 until 2018 he worked in the Service of Genetic Medicine at the Geneva University Hospitals, where his main activity was seeing children and adults with unclear conditions in order to try and find the cause of their problems. Since his part-retirement, he is now in charge of the consultations in the Service of Genetics of his hometown hospital. 

He is member of the Scientific Advisory Committee of the French Association of Families with CdLS and member of the Scientific Advisory Council of the CdLS World Federation.

Jürgen Kegel

Jürgen Kegel

Father of Christian

Jürgen is chairman of the German 'Arbeitskreis Cornelia de Lange Syndrom e.V.' 

Gerritjan Koekkoek

Gerritjan Koekkoek

Father of Rai

He is father of Rai (CdLS, November 1999). Motivated to know all you need to know about CdLS he joined the dutch 'vereniging Cornelia de Lange syndroom' and became chairman of this group in 2008. In Buenos Aires at the world conference about CdLS in Argentina he was elected chairman of the CdLS World federation. 

Gerritjan is an Information Architect. Within the CdLS World federation executive council he is especially advocating the role of family members and the CdLS Patients so they are involved in Knowledge Development and sharing their experience with other family members, professionals or researchers.

Gerritjan is currently past-chairman in the CdLS World Federation Council executive team and chairman of the dutch 'vereniging cdls' 

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