Meetings

10th World Conference

Arbeitskreis Cornelia de Lange Syndrom e.V. , Vereniging Cornelia de Lange syndroom , The World Federation of CdLS Support
21 supporters
Finished, Closed!

   

Together with experts and families we search, find and share with the purpose to learn, cry and celebrate.
Together we experience friendship, security and openness

Why are we doing this?

Families all over Europe are looking for answers and support. Together we can do more. Bringing together families and experts from all over the world will allow us to learn, discuss and improve how to handle the different challenges that come with the syndrome

What will you learn?

Leading experts will present and discuss with you the topics relevant to CdLS. Medical topics like reflux, cognitive topics like behaviour and emotional topics about how to deal with the challenges of this rare genetic condition as a family.

What are the benefits?

You will learn the latest and most comprehensive information available about CdLS. You will have a great time, in a relaxed atmosphere, and be able to talk about the issues with people that really understand you because they are in the same situation. It is very encouraging to see that you are not alone.



Why we believe this conference will be good

We are families with CdLS

All of us embarked on a mission after getting the diagnosis of CdLS for our child or brother or sister. We all have found some solution that could work for others as well. We share this knowledge and get together to share our emotions, our troubles but also our victories.

Energized by our children

To see the smile of CdLS Children is priceless. Families invest a great amount of energy to get the best quality of life. A lot will be consumed by the daily, lifelong care. But we have energy left over to get out and enjoy meeting with each other. Feeling part of this warm community is worth more than a 1000 words.

Supported by worldwide experts

To become an expert you need a good education. But you also need to meet people with CdLS. You need to have a certain amount of these encounters to learn about the specifics of a rare disease like CdlS. These experts are as rare as our children.

The CdLS World federation has brought together the experts world wide already in 9 conferences over 20 years. To meet these experts will be great for our families. But also to meet us will be a great experience for these experts to discover more about the syndrome.


The events on this conference

We want to offer a exiting program. For our scientific friends to each sibling that wants to enjoy a few exiting days


Speakers and Supporters

GERMANY
GERMANY
GERMANY

Prof. Dr. Frank Kaiser


Frank is (MD) Molecular Genetics of the International Scientific Advisory Council (SAC), Molekulare Genetik at Institute of Human Genetics, University Clinic of Essen, University Duisburg-Essen, Essen, (MD) wissenschaftliche Beirat at Arbeitskreis Cornelia de Lange Syndrom e.V. 

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. 


UNITED KINGDOM
UNITED KINGDOM
UNITED KINGDOM

Dr. David FitzPatrick


David is Clinical Genetics of the International Scientific Advisory Council (SAC), Professor of Paediatric Genetics at MRC Human Genetics Unit, Edinburgh

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. 


UNITED STATES
UNITED STATES
UNITED STATES

M.D, Ph.D. Matt Deardorff


Matt is Clinical Genetics of the International Scientific Advisory Council (SAC), MD PhD, Associate Medical Director, Roberts Individualized Medical Genetics Center  at Children's Hospital of Philadelphia

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. 


ITALY
ITALY
ITALY

Dr. Angelo Selicorni


Angelo is Paediatrics & Genetics of the International Scientific Advisory Council (SAC), MD, Director of Pediatric Unit at ASST Lariana Como, Coordinatore scientifico, pediatra e genetista.  at Ass. Naz. di Volontariato Cornelia De Lange ONLUS

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. 


UNITED STATES
UNITED STATES
UNITED STATES

M.D. Tonie Kline


Tonie is Clinical Genetics of the Harvey Institute of Human Genetics, Greater Baltimore Medical Centre, Baltimore, Medical Director at CdLS Foundation USA, Our Staff, MD, Director of Pediatric Genetics, Harvey Institute for Human Genetics, at Harvey Institute of Human Genetics, Greater Baltimore Medical Centre, Baltimore, Medical Director at International Scientific Advisory Council (SAC)

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. 


NETHERLANDS
NETHERLANDS
NETHERLANDS

Dr. Sylvia Huisman


Sylvia is Clinical Supervisor and Trainer of the Zodiak-Prinsenstichting, MD PhD at expertise centre Cornelia de Lange syndrome, Medical Director at Vereniging Cornelia de Lange syndroom, (MD) Physician for ID, SIB & CdLS at International Scientific Advisory Council (SAC)

She also works at the Centre for Consultancy and Expertise (CCE), specialized in complex behavior challenges. She did a PhD on Self-injurious Behaviour in Cornelia de Lange syndrome

Sylvia a teacher at the Erasmus University Medical Centre, Rotterdam.

She received her specialist training at the Prinsenstichting and at the Erasmus University Medical Centre, Rotterdam.


UNITED KINGDOM
UNITED KINGDOM
UNITED KINGDOM

Prof. Chris Oliver


Chris is Behavioural Psychology of the University of Birmingham, Behavioural Psychology at International Scientific Advisory Council (SAC)

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. 


NETHERLANDS
NETHERLANDS
NETHERLANDS

Dr. Paul Mulder


Paul is Behaviour specialist of the International Scientific Advisory Council (SAC), SAC member at Vereniging Cornelia de Lange syndroom, Behaviour specialist at Autism Team Northern-Netherlands, Jonx, the child- and adolescent psychiatry service of Lentis Psychiatric Institute

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.” 


NETHERLANDS
NETHERLANDS
NETHERLANDS

Dr. Inge van Balkom


Inge is Psychiatry of the International Scientific Advisory Council (SAC), Onderzoeker Psychiatrie at University of Groningen, Psychiater at Autism Team Northern-Netherlands, Jonx, the child- and adolescent psychiatry service of Lentis Psychiatric Institute

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. 



Show all Speakers and Supporters



Our vision

The conference of 2019, our dream

When the CdLS communities of Germany and the Netherlands decided to take on the challenge of the 2019 world conference they hoped for a great conference, Together!

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