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.

Conozca a nuestros disertantes

Hacemos nuestro mejor esfuerzo para invitar a personas de todo el mundo que puedan brindarle la ayuda que espera. Tanto profesores, maestros, padres o hermanos con experiencia discutirán los temas para la mejor calidad de vida posible. Nuestro lema; ¡JUNTOS!

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.
Präsidentin der Universität zu 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


Padre de Christian

Presidente de CdLS Alemania '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' 


Etiquetas:
Creado por Gerritjan Koekkoek el 2018/11/25 12:57

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