TOGETHER

10th World Conference Cornelia de Lange Syndrome 2019

Together experts and families search for answers, find solutions and share best practice. Our understanding of CdLS is increased and families are better able to deal with challenges of raising their children.

Together we strengthen friendship, in an emotionally safe environment. Parents are supported and encouraged to share concerns and and celebrate triumphs.

Family conference

 There is a packed conference program on Friday and Saturday where families can learn of the latest developments and strategies for working with people affected by CdLS and hear of health treatments and risks long before the information becomes...

Scientific Symposium

 There is a one-day conference on Thursday looking at the challenges facing professionals working with somebody affected by a condition like CdLS where the well-documented problems of autism are complicated by a myriad of medical issues. We hope that...

Sibling program

 It is very important to us that sisters, brothers and other members can join the family at our event.

So parallel to the conference there will be lots for them to do in a separate side program.

CdLS Care program

 We would like to offer families the opportunity to make the conference great for your CdLS child or client. We understand that listening to lectures or participating in workshops is not the best for some of them.

It is a...

Siblings Care (up to 6)

 We would like to offer families the opportunity to make the conference great for your child. We understand that listening to lectures or participating in workshops is not the best for some of them.

We will take care of the...

Gala dinner

 To celebrate the courage that you all showed by coming to our event we organize a party.

It will be great to sit back and relax. Talk with your (new) friends or have a wine with the expert you have...

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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!

Frank Kaiser

Professor of Functional Genetics and Human Genetics, Institute of Human Genetics, University of Lübeck, Germany

Since 2013, he has been Professor of Functional Genetics and Human Genetics at the Institute of Human Genetics at the University of Lübeck. In addition to genetic and functional analysis in the field of cohesinopathies (like Cornelia de Lange syndrome), the research of his research group focuses on molecular mechanisms in the area of genetic disorders and hereditary diseases

He studied biology at the Ruhr-University Bochum. In his doctorate and postdoctoral studies at the Institute of Human Genetics in Essen, he performed functional analysis of the transcription factor TRPS1. 

Member of the Scientific Advisory Council of the CdLS World Federation.

David FitzPatrick

Professor of Paediatric Genetics, MRC Human Genetics Unit, Edinburgh, UK

David has been a consultant in paediatric genetics in Edinburgh since 1994. His clinical interests are in paediatric neurodevelopmental disorders and in the identification of genetic causes of serious developmental disorders.

He studied medicine at University of Edinburgh and then trained in paediatrics in Edinburgh, Bristol and Glasgow. He trained in clinical genetics in Glasgow as a Wellcome Trust Clinical Research Fellow and in Johns Hopkins Hospital in Baltimore on a Howard Hughes Medical Institute Clinical Research Fellowship. 

Member of the Scientific Advisory Council of the CdLS World Federation.

Matt Deardorff

MD PhD, Associate Medical Director, Roberts Individualized Medical Genetics Center at Children's Hospital of Philadelphia, USA

He did his PhD in Cell and Molecular Biology and is an attending physician and Associate Medical Director of the Roberts Individualized Medical Genetics Center at Children's Hospital of Philadelphia. 

He did his medical specialist training in Pediatrics at Children's Hospital of Philadelphia, followed by a fellowship in genetics at Children's Hospital of Philadelphia & University of Pennsylvania. 

Member of the Scientific Advisory Council of the CdLS World Federation.

Angelo Selicorni

MD, Director of Pediatric Unit at ASST Lariana Como, Italy

He has been involved in the diagnosis and in the medical follow-up of patients with genetic syndromes like Cornelia de Lange syndrome since 1990. He is working at Telethon, has written many articles and other publications on CdLS and other genetic syndromes and is a paediatric expert on gastro-oesophageal reflux disease in CdLS

He is a paediatrician and medical geneticist working in the paediatric department at ASST Lariana, Como, Italy. 

Medical Director of the Italian CdLS support group, the past president and current member of the Scientific Advisory Council of the CdLS World Federation. 

Tonie Kline

MD, Director of Pediatric Genetics, Harvey Institute for Human Genetics, Greater Baltimore Medical Center, Baltimore, USA

Tonie's areas of expertise include evaluation of multiple birth defects and/or developmental issues and interpretation of clinical testing results

She received her medical degree and postdoctoral training in medical genetics from Jefferson Medical College, Philadelphia, PA., and clinical cytogenetics and molecular training at the Johns Hopkins University School of Medicine, Baltimore, Md. 

She is also a Fellow of the American Academy of Pediatrics and a Founding Fellow of the American College of Medical Genetics. 

Medical Director of the Cornelia de Lange Syndrome Foundation USA and member of the Scientific Advisory Council of the CdLS World Federation.

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.

Chris Oliver

Professor of Neurodevelopmental Disorders, Cerebra Centre for Neurodevelopmental Disorders, School of Psychology, University of Birmingham, Birmingham, UK

Chris is currently researching early intervention of behaviour disorders in people with severe intellectual disability and autism spectrum disorder, behavioural phenotypes in genetic syndromes and neuropsychological and behavioural assessment for people with severe intellectual disability. 

He is Professor of Neurodevelopmental Disorders and Director of the Cerebra Centre for Neurodevelopmental Disorders at the University of Birmingham.

He was trained as a clinical psychologist at Edinburgh University before completing a PhD on self-injurious behaviour in people with intellectual disability at the Institute of Psychiatry, London. 

Editor in Chief for the Journal of Intellectual Disability Research. He is a member of the Scientific Advisory Council of the CdLS World Federation.

Paul Mulder

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.

Inge van Balkom

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

She was trained as a psychiatrist in Amsterdam and continued her training as a child and adolescent psychiatrist, including a residency in Clinical Genetics. 

She received her medical degree at Groningen University.

From 2006 to date Inge has been employed as Medical Director at Autism Team Northern-Netherlands, Jonx, the child- and adolescent psychiatry service of Lentis Psychiatric Institute in Groningen. 

She is a member of the Global Partnerships in the Epidemiology of Developmental Disabilities, and of the CDC-National Center on Birth Defects and Developmental Disabilities, Atlanta, USA. 

Member of the Scientific Advisory Council of the CdLS World Federation.

 

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Together made possible by

We are very happy and proud that we were able to bring together a group of organizations that will make this conference possible.

Get in touch

Would you like yo know more, maybe you have a question. We will try our best to react as soon as possible. Help us if you think we forgot something...

Contact information

Arbeitskreis Cornelia de Lange E.V.
Germany
info@corneliadelange.de
Vereniging Cornelia de Lange syndroom
Netherlands
vereniging@cdlsworld.org

Nøgleord:
Oprettet af Gerritjan Koekkoek den 2018/07/12 17:29

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