10th WORLD CONFERENCE CORNELIA DE LANGE SYNDROME 2019

2 days for families, 1 day a symposium for caregivers, teachers, doctors and researchers

Dorint Parkhotel Bad Neuenahr
31 juli - 03 august 2019

Be there...
98 Days
07 Hours
21 Minutes
04 Seconds
 

location

Dorint Parkhotel Bad Neuenahr

 

Date & Time

31 juli - 03 august 2019

Together

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

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...

 published. Many of the professionals will be on hand to hold individual private consultations with families to help assess issues affecting the person with CdLS.

The event can start with individual meetings for different countries run by their national professional directors and will give a summary of the SAC meeting in their own language.

All main sessions will have simultaneous translation for those languages for which there are 20 or more persons attending. We are also looking for language volunteers to help with interpretation for doctor consults.

We are planning a series of trips out suitable for all ages for the siblings and young people attending the conference. And in the evenings there is plenty of fun for all the family at our planned social events.

Show detail program (still under construction)

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...

 by addressing some of those issues and looking at an holistic approach to the treatment and management of people affected we will be able to develop a model of care that can be shared internationally. This will help people into the future.

Show detail program of the symposium

The conference Area

Bad Neuenahr-Ahrweiler

For a long time people have travelled to Bad NeuenahrAhrweiler during summer to take advantage of all this region has to offer. For different reasons: some want to improve their health. Gourmets and culinary lovers love the good...

 life with fine wines and great restaurants. The active guests appreciate the wide range of sporting activities that Waldkletterpark, Rotweinwanderweg, Ahrsteig and Nordic Fitness Park have to offer. Culture fans expand their thirst for knowledge in the Roman villa, within the Ahrweiler city wall or in the cultural offerings in the spa park. In addition, numerous parks, walking paths along the Ahrufers, swimming pools or sidewalk cafés invite you to relax. Holiday mood is everywhere.

In the middle of the Ahr valley, between forests and vineyards, lies the town of Bad Neuenahr-Ahrweiler. Cultural diversity is particularly evident in architectural structures. Thus, in Ahrweiler, the influence and rule of the Romans is reflected. Buildings such as the city gates or the historic city walls bear witness to the long-gone era. The district of Bad Neuenahr, on the other hand, is a witness to the glamorous imperial era, whose influence is still recognizable today in the most diverse buildings and streets and has lost nothing of its elegance. Varied entertainment, state-of-the-art quality standards, historic buildings amidst the picturesque landscape of the Ahr Valley - this is Bad Neuenahr-Ahrweiler.

  

Meet our experts

We are doing our best to invite those from around the world that can give you the insights you hope for. Both professors, teachers, experienced parents or siblings will discuss the topics for the best quality of life possible. Our motto; TOGETHER!

Frank Kaiser

Frank Kaiser

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 analyzes 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

David FitzPatrick

is a professor and 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

Matt Deardorff

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

Angelo Selicorni

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 and wrote many articles and other publications on CdLS and other genetic syndromes and is pediatric expert on gastro-oesofageal reflux disease in CdLS

He is a pediatrician and medical geneticist working in a pediatric department at ASST Lariana, Como, Italy. 

medical director of the Italian CdLS support group, the past president and still board member of the Scientific Advisory Council of the CdLS World Federation. 

Antonie Kline

Antonie Kline

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 board member of the scientific advisory council of the CdLS World Federation. 

Sylvia huisman

Sylvia huisman

is a clinical supervisor of the specialist training program at Prinsenstichting and a teacher at the Erasmus University Medical Center, Rotterdam. She did a PhD on Self-injurious Behaviour in Cornelia de Lange syndrome

She works at Prinsenstichting, at the Amsterdam Expertise Center for Neurodevelopmental Disorders (including Cornelia de Lange syndrome) at the Amsterdam University Medical Center, 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 Center, Rotterdam. 

medical director of the Dutch CdLS group and president of the scientific advisory council of the International CdLS Federation.

Chris Oliver

Chris Oliver

is currently researching early intervention, 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 at the University of Birmingham and Director of the Cerebra Centre for Neurodevelopmental Disorders.

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

Paul Mulder

specializes 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 behavioral 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 behavioral advisor of the Dutch CdLS group and board member of the scientific advisory council of the CdLS World Federation.

Inge van Balkom

Inge van Balkom

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 is 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. 

She is a member of the scientific advisory council of the CdLS World Federation.

 

News about 2019 Cornelia de Lange conference

The 2019 Worldconference will be a great experience for everybody involved with Cornelia de Lange syndrome

Take a look at our conference packages

We try to make the conference attractive for as many people as possible; Families with children, Parents or Siblings coming alone, volunteers, experts looking for information, speakers and/or workshop leaders, leaders from other CdLS groups,...

 

With your entire family to the family conference - August 2 - 3, 2019

  • conference participation
  • gala party
  • activities for siblings (7-17 years)
  • have individual consultations (1:1)
 

Special package for Students

  • conference participation
  • gala party
  • have individual consultations (1:1)
 

Professionals - Symposium on August 1st, 2019

  • symposium for professionals
  • A shuttle service to get and bring you to the airport can be booked separately

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

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