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
02-Aug-2019- 03-Aug-2019

Familie conferentie

Op vrijdag 2 en zaterdag 3 augustus biedt het programma families de gelegenheid te leren over behandelmethoden en gezondheidsrisico’s, lang voordat deze gepubliceerd worden. 

Verder hoort men over de laatste ontwikkelingen en strategieën in de behandelingen van personen met CdLS. Bovendien kan in besloten kring individuele problemen worden besproken met een deskundige.

Alle lezingen worden simultaan vertaald naar het Nederlands. We zoeken ook vrijwilligers die bereid zijn om individuele consulten en workshops te vertalen.

Voor alle kinderen die aan de conferentie deelnemen, worden in de tussentijd uitstapjes georganiseerd. Ook wordt er gezorgd voor een leuk avondprogramma voor het hele gezin. 

03-Aug-2019

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 met in the past days.
History showed that the galadiner is something to look out for...

01-Aug-2019

Wetenschappelijk symposium

Het doel van deze eendaagse bijeenkomst op donderdag 1 augustus is de uitdagingen te bespreken waarmee de professionals bij hun werk met mensen met CdLS geconfronteerd worden. Een syndroom waarbij het begrijpen van het gedrag wordt bemoeilijkt door een breed scala aan medische aspecten. 

We hopen dat we door een uitvoerige bespreking van de problemen een voorbeeldmodel kunnen ontwikkelen dat internationaal gebruikt kan worden en toekomstige betrokkenen kan helpen.
Op deze bijeenkomst worden ook de lang verwachte richtlijnen voor het Cornelia de Lange Syndroom besproken.

02-Aug-2019- 03-Aug-2019

1:1 consultations

A family will get the opportunity to meet experts and discuss individual cases.
02-Aug-2019- 03-Aug-2019

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.

02-Aug-2019- 03-Aug-2019

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 matter close to our hearts to offer 1:1 care for our persons with CdLS. We are planning with a playroom and a room for resting and „snoezelen“, both next to the conference area. We hope the weather to be fine enough to profit from the wonderful park surrounding.
The participants will be entrusted to their caregivers from 8.45 h on. For the breaks and after the end of the conference, we kindly ask you to pick up your „Cornelia“.

02-Aug-2019- 03-Aug-2019

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 younger siblings in our „kindergarten“ next to the conference area. But we hope very much that the weather will be fine so that the children can make use of the toys on the „spielmobil“ the town kindly let us have, or go to the playground nextby.
The caregivers will be on place from 8.45 h on so that you can hand over your children. Please collect your children for the breaks and after the end of the conference.

Speakers and Supporters

GERMANY
GERMANY
GERMANY

Prof. Dr. Frank Kaiser


Frank is (MD) Molecular Genetics of the International Scientific Advisory Council (SAC), Frank is Molekulare Genetik of the Institute of Human Genetics, University Clinic of Essen, University Duisburg-Essen, Essen, Frank is (MD) scientific advisory committee of the 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), David is Professor of Paediatric Genetics of the 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), Matt is MD PhD, Associate Medical Director, Roberts Individualized Medical Genetics Center  of the 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), Angelo is MD, Director of Pediatric Unit of the ASST Lariana Como, Angelo is Coordinatore scientifico, pediatra e genetista.  of the 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, Tonie is Medical Director of the CdLS Foundation USA, Our Staff, Tonie is MD, Director of Pediatric Genetics, Harvey Institute for Human Genetics, of the Harvey Institute of Human Genetics, Greater Baltimore Medical Centre, Baltimore, Tonie is Medical Director of the 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, Sylvia is MD PhD of the expertise centre Cornelia de Lange syndrome, Sylvia is Medical Director of the Vereniging Cornelia de Lange syndroom, Sylvia is (MD) Physician for ID, SIB & CdLS of the 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, Chris is Behavioural Psychology of the 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), Paul is SAC member of the Vereniging Cornelia de Lange syndroom, Paul is Orthopedagoog /  of the expertise centre Cornelia de Lange syndrome, Paul is Behaviour specialist of the 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), Inge is Onderzoeker Psychiatrie of the University of Groningen

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!