Expertise network

Welcome to the expertise network for Cornelia de Lange Syndrome. Because Cornelia de Lange Syndrome is a very complicated disorder, families around Cornelia de Lange Syndrome have searched and found centre's of expertise together with the formally recognized expertise centre. This network can help your local doctors, day-care centre's, schools and therapeutists to deliver the right care, close to home.

Our information as basis

The experts within this Cornelia de Lange Syndrome network work together to provide the best possible information about Cornelia de Lange Syndrome on this website. They are also motivated to read your stories and answer your questions to learn more about Cornelia de Lange Syndrome. This website is therefore a tool for healthcare provider, healthcare insurer and your family.

Cornelia de Lange syndrome (CdLS) is a rare genetic disorder. Many people have never heard of it before. It causes several physical, cognitive and medical challenges. Although no two children with this condition are the same, there are many similarities in the external features and behaviour.

 

Network of experts for

Network of expertise

Cerebra Network for Neurodevelopmental Disorders

united kingdom
Network of expertise

Erasmus MC, Cell Biology

netherlands
Network of expertise

Royal Kentalis

netherlands
Network of expertise

expertise centre Cornelia de Lange syndrome

netherlands
Network of expertise

Institut Central des Hôpitaux - Hôpital du Valais, Sion

switzerland
Network of expertise

University Hospital of Copenhagen

denmark
Network of expertise

University Hospital Lozano Blesa in Zaragoza

spain
Network of expertise

University of Birmingham

united kingdom
Network of expertise

MRC Human Genetics Unit, Edinburgh

united kingdom
Network of expertise

APHP Hôpital Necker Universitaire Enfants Malades

france
Network of expertise

Harvey Institute of Human Genetics, Greater Baltimore Medical Centre, Baltimore

united states
Network of expertise

International Scientific Advisory Council (SAC)
Network of expertise

Medical University of Gdańsk

poland
Network of expertise

Department of Anatomy and Neurobiology of the Neuroscience at UC Irvine

united states
Network of expertise

Children's Hospital of Philadelphia

united states
Network of expertise

Autism Team Northern-Netherlands, Jonx, the child- and adolescent psychiatry service of Lentis Psychiatric Institute

netherlands
Network of expertise

ASST Lariana Como

italy
Network of expertise

University of Groningen

netherlands
Network of expertise

Erasmus MC, iPS core facility

netherlands
Network of expertise

Institute of Human Genetics, University Clinic of Essen, University Duisburg-Essen, Essen

germany
Network of expertise

Zodiak-Prinsenstichting

netherlands
Network of expertise

Séguin-Klinik Epilepsiezentrum Kork

germany
Network of expertise

CdLS Foundation USA, Our Staff

united states
Network of expertise

Linha Raríssimas - Linha Rara

portugal
Network of expertise

Royal Hospital for Sick Children, Edinburgh

united kingdom

Network of expertise

Network of expertise

Zodiak-Prinsenstichting

netherlands
Network of expertise

Royal Kentalis

netherlands
Network of expertise

Autism Team Northern-Netherlands, Jonx, the child- and adolescent psychiatry service of Lentis Psychiatric Institute

netherlands
Network of expertise

University of Groningen

netherlands
Network of expertise

Séguin-Klinik Epilepsiezentrum Kork

germany
Network of expertise

CdLS Foundation USA, Our Staff

united states
Network of expertise

Linha Raríssimas - Linha Rara

portugal

                         

Team

UNITED KINGDOM
UNITED KINGDOM
UNITED KINGDOM
Anxiety, mental health Behavioural Psychology

Dr. Hayley Crawford

UNITED KINGDOM
UNITED KINGDOM
UNITED KINGDOM
Autism, autistic traits Behavioural Psychology

Dr. Jo Moss

UNITED KINGDOM
UNITED KINGDOM
UNITED KINGDOM
Sleep expertise Behavioural Psychology

Dr. Caroline Richards

UNITED KINGDOM
UNITED KINGDOM
UNITED KINGDOM
Anxiety, Mental health Behavioural Psychology

Dr. Jane Waite

UNITED KINGDOM
UNITED KINGDOM
UNITED KINGDOM
School of Psychology, Doctoral Researcher

BSc Laura Groves

GERMANY
GERMANY
GERMANY
Molekulare Genetik (MD) Molecular Genetics

Prof. Dr. Frank Kaiser

GERMANY
GERMANY
GERMANY
Postdoctoral Researcher

Postdoctoral Researcher Ilaria Parenti

NETHERLANDS
NETHERLANDS
NETHERLANDS
Clinical Supervisor and Trainer MD PhD (MD) Physician for ID, SIB & CdLS

Dr. Sylvia Huisman

NETHERLANDS
NETHERLANDS
NETHERLANDS
Professor - Principal Investigator Molecular Genetics Research

PHD. Kerstin Wendt

NETHERLANDS
NETHERLANDS
NETHERLANDS
Professor - Principal Investigator

Dr. Debbie van den Berg

NETHERLANDS
NETHERLANDS
NETHERLANDS

Amber Hof

NETHERLANDS
NETHERLANDS
NETHERLANDS

PHD. Student Marieke Alzeer

NETHERLANDS
NETHERLANDS
NETHERLANDS
behavioural expert

Eline van Rooij

NETHERLANDS
NETHERLANDS
NETHERLANDS

Anne Schoone

NETHERLANDS
NETHERLANDS
NETHERLANDS
Teacher

Ineke Heijnen

NETHERLANDS
NETHERLANDS
NETHERLANDS
Senior Researcher SAC Member Endowed Professor

Prof. Dr. Saskia Damen

NETHERLANDS
NETHERLANDS
NETHERLANDS
Teacher

Mariell van Heesch

NETHERLANDS
NETHERLANDS
NETHERLANDS
Teacher

Marieke Kapteijns

NETHERLANDS
NETHERLANDS
NETHERLANDS
Developmental and Genetic Pediatrician and clinician-scientist Developmental and Genetic Paediatrics

Dr. Leonie Menke

NETHERLANDS
NETHERLANDS
NETHERLANDS
Klinisch Geneticus

Drs. Saskia Maas

SWITZERLAND
SWITZERLAND
SWITZERLAND
Genetics (MD) Genetics

Dr. Armand Bottani

DENMARK
DENMARK
DENMARK
Pædiatrik Paediatrics

Dr. Anne-Marie Bisgaard

SPAIN
SPAIN
SPAIN
Pediatra - Genética Clínica (MD) Pediatrician - Clinical Genetics

Dr. Feliciano Ramos

SPAIN
SPAIN
SPAIN

Dr. Juan Pié

SPAIN
SPAIN
SPAIN

Ana Isabel Cisneros

SPAIN
SPAIN
SPAIN

Ariadna Ayerza

UNITED KINGDOM
UNITED KINGDOM
UNITED KINGDOM
Behavioural Psychology Behavioural Psychology

Prof. Chris Oliver

UNITED KINGDOM
UNITED KINGDOM
UNITED KINGDOM
Professor of Paediatric Genetics Clinical Genetics

Dr. David FitzPatrick

FRANCE
FRANCE
FRANCE
Clinical Genetics

Valerie Cormier-Daire

UNITED STATES
UNITED STATES
UNITED STATES
MD, Director of Pediatric Genetics, Harvey Institute for Human Genetics, Medical Director Medical Director

M.D. Tonie Kline

UNITED STATES
UNITED STATES
UNITED STATES
Medical Director, Genetics; Director, Prenatal Diagnostic Center; Medical Director, Clinical Cytogenetics Gynecology, Genetics

M.D. Natalie Blagowidow

NETHERLANDS
NETHERLANDS
NETHERLANDS
Psychiatry Psychiater Onderzoeker Psychiatrie

Dr. Inge van Balkom

ITALY
ITALY
ITALY
Paediatrics & Genetics MD, Director of Pediatric Unit

Dr. Angelo Selicorni

UNITED STATES
UNITED STATES
UNITED STATES
Clinical Genetics

M.D, Ph.D. Matt Deardorff

POLAND
POLAND
POLAND
Paediatrics Pediatria

Prof. Dr. Jolanta Wierzba

UNITED KINGDOM
UNITED KINGDOM
UNITED KINGDOM
(MD) Gastroenterology Gastroenterology

Dr. Peter Gillett

BRAZIL
BRAZIL
BRAZIL
(MD) General Practitioner in Brazil

Dr. Andréa Scaletzky

GERMANY
GERMANY
GERMANY
Psychiatry Psychiatrie

Prof. Dr. Peter Martin

GERMANY
GERMANY
GERMANY
Genetics

Prof. Dr. Gabriele Gillessen-Kaesbach

ITALY
ITALY
ITALY
Genetic Counselling

Dr.ssa Anna Cereda

UNITED STATES
UNITED STATES
UNITED STATES
Education

N.C.S.P Mary Levis

UNITED STATES
UNITED STATES
UNITED STATES
Behavioural Psychology

Ph.D Julia OConnor

UNITED STATES
UNITED STATES
UNITED STATES
Dentistry

D.M.D. Douglas Clemens

ARGENTINA
ARGENTINA
ARGENTINA
(MD) Genetics

Dra. Ana Laura Quaglio

NETHERLANDS
NETHERLANDS
NETHERLANDS
Behaviour specialist Behaviour specialist

Dr. Paul Mulder

ARGENTINA
ARGENTINA
ARGENTINA
Orthopaedics

Doctor Elias A. Escobedo Paz

UNITED STATES
UNITED STATES
UNITED STATES
Child Psychiatry

M.D., M.P.H. Marco Grados

UNITED STATES
UNITED STATES
UNITED STATES
Clinical Genetics Professor of Pediatrics and Genetics

M.D. Ian Krantz

UNITED STATES
UNITED STATES
UNITED STATES
CCC-SLP, Speech, Language and Feeding

Ph.D Cheri Carrico

UNITED STATES
UNITED STATES
UNITED STATES
Pediatric Ophthalmology

M.D. Alex Levin

ITALY
ITALY
ITALY
Neuropsychiatry

Dr.ssa Paola Francesca Ajmone

UNITED STATES
UNITED STATES
UNITED STATES
working on stem cell systems biology and human developmental disorders

Dr. Anne Calof

NETHERLANDS
NETHERLANDS
NETHERLANDS
Full Professor for Special Needs Education

Marleen Janssen

NETHERLANDS
NETHERLANDS
NETHERLANDS
Head iPS core facility

PhD. Mehrnaz Ghazvini

PORTUGAL
PORTUGAL
PORTUGAL

Joana Santos

On this site

About the website contents

All of the information on this WebSite is for education purposes only. The place to get specific medical advice, diagnoses, and treatment is your doctor. Use of this site is strictly at your own risk. If you find something that you think needs correction or clarification, please let us know at: 

Send a email: info@cdlsWorld.org