We, as people, are social beings. Our Cornelias are for sure. They are very interested in their social environment. And like ourselves they get a lot of joy when they are understood and people help them in what they want to achieve. But expressive communication is a challenge.

The behaviour that is shown in people with CdLS can be confusing but when understood can give you a wealth of information.
It can be another form of communication that can tell as much as words normally do.

How can we understand what they are trying to say? What does it mean? Can they learn to communicate in ways others can better understand? This session is about what we can do and what can be achieved in this field of communication.

20-25 minutes introduction by Marleen Janssen

20-25 minutes of interaction

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!

Paul Mulder

Paul Mulder

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MSc, Autism Team Northern-Netherlands, Jonx Department of Youth Mental Health and Autism, of Lentis Psychiatric Institute, Groningen, The Netherlands.

Paul specialises in assessment of children and adults with severe and complex autism spectrum disorders, especially supportive communication, social-emotional functioning, sensory information processing and cognitive development in children and adolescents with autism spectrum disorders

He is behavioural specialist at Autism Team Northern-Netherlands, Jonx, the child- and adolescent psychiatry service of Lentis Psychiatric Institute in Groningen. 

He did his PhD on "Cognition, self-injury and autism in Cornelia de Lange Syndrome: their mutual relationships and genetic background.” 

He is behavioural advisor of the Dutch CdLS group and a member of the Scientific Advisory Council of the CdLS World Federation.

Marleen Janssen

Marleen Janssen

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Professor at the Department of Special Needs Education at the University of Groningen in the Netherlands.

Marleen has been Professor at the Department of Special Needs Education at the University of Groningen in the Netherlands since 2008. She specialises in congenital (like with CdLS) and acquired deafblindness. Her research is mainly focused on intervention studies in children and adults who are congenital deafblind, which impact communication, language acquisition, development and learning. 

Innovative instructional methods are used to coach teachers, parents and support workers, improving their insights and skills for better interaction and tactile communication. Theories from developmental psychology on attachment, intersubjectivity and self-determination form the basis of these investigations which are performed in classrooms, homes and group home settings.

She has a structural collaboration with Royal Dutch Kentalis, where she worked for 25 years at the school Kentalis-Rafaël, for children with deafblindness.

In her studies Marleen has seen a few children with Cornelia de Lange syndrome. Based on these studies she has presented at the CdLS World Conference in 2013 in Buenos Aires (Argentina).  

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