Sponsors and Partners

  


Picture of MaluDreyer

G r u ß w o r t

Dear participants,

On behalf of Rheinland-Pfalz I extend heartfelt greetings to participants in the 10th World Conference Cornelia-de-Lange Syndrome in Bad Neuenahr- Ahrweiler. I am delighted that the World Conference is being held in Rheinland-Pfalz and hope that, in addition to the family conference and the symposium, you will have the opportunity to enjoy the hospitality of Rheinland-Pfalz. 

The motto of the 10th World Conference is "Together", because together we can overcome more challenges and achieve more. The 'arbeitskreis' Cornelia-de-Lange-Syndrom e.V. (Germany) organised the conference together with the 'vereniging' Cornelia de Lange syndroom (Netherlands and Belgium) in order to enable people with Cornelia de Lange syndrome and families to exchange experiences with others, but also to get in touch with experts and to inform themselves about the latest developments in science, therapies and medicine. Last but not least, the World Conference will be a celebration for the children, which they can experience together with their families.

I would like to take this opportunity to congratulate the Arbeitskreis Cornelia-de-Lange-Syndrom e.V. on its 25th anniversary. The members of the working group have made a decisive contribution to increasing the quality of life of those affected and their relatives. I would like to take this opportunity to express my sincere thanks to all the active and former club members for their contribution to this demanding and important work. 

My special thanks go to all the supporters and sponsors as well as the volunteers, who have come forward, to make this conference a success. I wish you all a successful world conference and many productive and useful meetings!

signature.png

Malu Dreyer
Prime Minister of Rheinland-Pfalz

Picture of GuidoOrthen

Welcome to Bad Neuenahr-Ahrweiler!

Dear participants,

I would like to welcome you and your families to the 10th World Conference Cornelia-de-Lange-Syndrome in the Dorint Parkhotel Bad Neuenahr! 

We are very happy that this event will take place for the first time in Bad Neuenahr-Ahrweiler, in the middle of the Ahr valley. We are sure that you will enjoy the location with all that it has to offer. 

Bad Neuenahr-Ahrweiler is an excellent meeting place and I am sure it will be conducive to a productive and worthwhile Conference. As the original spa centre Bad Neuenahr forms the core of today’s Bad Neuenahr-Ahrweiler Health Competence Centre.
With various neo-baroque style buildings, extensive parks and numerous health-promoting offers and events, the spa is today a unique place for well-being, relaxation and joie de vivre.
At the World Conference, leading experts will provide comprehensive information on current medical challenges and scientific backgrounds at the symposium. Within the framework of the subsequent family conference, there will be the opportunity to exchange views on treatment methods, developments and strategies in dealing with affected people. 

In addition to medical aspects, the event will focus above all on one thing - humanity and the love of life. Through your voluntary work and your commitment within the framework of the CdLS World Conference, you all send an important signal to our society. Together you will make a decisive contribution to raising awareness of issues such as inclusion and integration across national and religious borders. Because only when all people feel seen and recognized can appreciation and respect for human life be experienced.

I wish all participants of the 10th World Conference Cornelia-de-Lange-Syndrome an informative and insightful symposium and family conference as well as an exciting and relaxing stay in Bad Neuenahr-Ahrweiler. 

signature.png

Guido Orthen
Mayor of the district town
Bad Neuenahr-Ahrweiler

Picture of DavidAxtell

Dear Families, Professionals, Carers and all other Participants in any capacity

Welcome to the 10th CdLS World Conference in Bad Neuenahr-Ahrweiler. The reason for the over extended greeting is simply to offer an inclusive hand of welcome to everybody. Whether you are reading this as one of the families, one of our dedicated professionals, a carer for an affected person or someone working for the organisers, translators and other staff who will run this event, ALL are very welcome. As the Mayor has already said, the theme for this conference is “Together” and a very apt theme it is.

One of the simplest aims of conference, is to bring people together. We share not only crucial information, informative experiences but we also share the joys, trials and burdens of living with people affected by CdLS. An old English adage says, "a trouble shared is a trouble halved!"

It is also one of the mainstays of the World Federation of CdLS Support Groups that we are stronger “Together,” can achieve more “Together.” CdLS is rare, accounts for a tiny fraction of the population. As individual national support groups representing maybe dozens, maybe hundreds of CdLS people, we can seem like a very insignificant section of the community. Bring those groups together and we are representing thousands across the world. Connect us with other rare disease groups through our links with organisations like Eurordis and we are now a significant proportion of the population. Do you see the power of “Together?”

Likewise, the Scientific Advisory Council (SAC) is a panel of experts on all of the medical and other therapeutic specialities that concern CdLS. The SAC brings all of that knowledge “Together.” These two bodies have created the partnership between families and scientists which brings us all together, here at conference. It was working together that gave us the newly published Global Treatment Guidelines for CDLS - available on this website!

So welcome to this, the 10th CdLS World Conference. I look forward to meeting all of you, hearing your stories and joining you in learning more - Together!

I hope you get the most out of this shared experience

Signature.jpg

David Axtell
President
World Federation of CdLS Support Groups

Picture of SylviaHuisman

Together!

It is a great pleasure and honour to welcome you at the Xth Cornelia de Lange World Conference in Bad Neuenahr-Ahrweiler, Germany. At this anniversary conference we celebrate two decades of warm and successful reunions of families, professionals and researchers from all over the world.
Cornelia de Lange syndrome is named after a famous professor of paediatrics who worked in Amsterdam a century ago. We commemorate her paper describing two children with the syndrome in 1933. There are now hundreds of individuals with the syndrome recorded in literature. Both medical and social sciences have embraced individuals with the syndrome together with their families.

This conference will be a meeting-up with families and leaders in research and care, who together realized the 1st International consensus statement: Diagnosis and management of Cornelia de Lange syndrome (Nature Reviews Genetics, 2018)!

The aim of this special and dedicated Conference is to bring together researchers and professionals of different disciplines to promote an interdisciplinary research and care approach and to work very closely together with people with CdLS and their families.
At this very moment we are proud to present an interesting scientific symposium ‘From bench to bedside: Cornelia de Lange syndrome as a model for translational and interdisciplinary research and guidelines development in rare disorders’. For the first time we focus on interdisciplinary approaches and reflect upon what we can learn and achieve together, now and in the future. 

I wish you a wonderful and learning time TOGETHER!

signature.png

Sylvia Huisman
President Scientific Advisory Council CdLS World and advisor of the dutch Vereniging Cornelia de Lange syndroom

Picture of FrankKaiser

Dear families, colleagues and friends,

I am very much looking forward to the tenth World Conference. This joint meeting of families and so-called 'experts' of the Cornelia de Lange Syndrome (CdLS) always has a very special meaning for me. My scientific studies in 2006 brought me for the first time indirectly into contact with the CdLS on a "molecular level". In 2007, I travelled to the Niagara Falls in Canada to attend the CdLS World Conference to meet patients and families for the first time. Previously, my meetings were purely scientific and without a direct involvement of the 'real experts', namely the families who face the challenge of managing a life with CdLS every day. No textbook knowledge in the world can provide this knowledge and experience, which I always gain at meetings with families. It is a great honour and pleasure to participate in this conference as well.

Together we learn from each other and only together we will be able to develop and implement projects that are for the benefit of the patients. Without the support of numerous families my work would not be possible and I thank you very much for it! I am really looking forward to the common days in Bad Neuenahr-Ahrweiler. Of course, I am also looking forward to the exchange with my colleagues, who will come from many countries around the world. Together we will discuss our latest knowledge with the families and take new knowledge from the families with us into our institutes, clinics and laboratories. Together' is the motto of this conference and for none of my fields of activity does this word and its meaning fit better than for the Cornelia de Lange syndrome. I have the feeling of being a small part of this "COMMON", which fills me with great pride. I have known many people who read these lines for a long time. Mr Kaiser is 'Frank' and my bulletin board in the office is decorated with loving Christmas cards and photos of numerous families. 

So, before I become too much now... I am very much looking forward to the conference, numerous conversations, exchange of experiences and a simply good time together.

With cordial greetings,

signature.png

Frank Kaiser
Medical advisor of
Arbeitskreis Cornelia de Lange syndrom E.v.

Picture of JurgenKegel

Dear families and participants of the 10th World Conference!

We are very pleased to welcome you in Bad Neuenahr-Ahrweiler at the Dorint-Hotel.

When our son, Christian, was born in November 1990, he was diagnosed with Cornelia de Lange syndrome. We could not do anything with this diagnosis at that time and wanted to know more about it. So we tried to make contacts. We asked the Gentische Beratungsstelle Heidelberg, the VDK, the Lebenshilfe and the Elternzeitschrift for contact addresses. At that time there was no information about the Cornelia de Lange syndrome on the Internet.

We just wanted to know what was coming, how other families in their lives were dealing with this diagnosis. We got to know some parents with children, with different developments, who met us often and exchanged with others and gave newly affected families first information. It was a special feeling to feel that we are not alone with our problems. 

The group of parents became bigger and bigger. On 28 May 1994, we agreed that we would found a self-help association for parents together. We agreed on the association name Arbeitskreis Cornelia-de-lange-Syndrom e.V.. It is now 25 years ago. Much has happened in this time. There were beautiful events, but also less beautiful ones. The most beautiful are and have always been the joint meetings. Friendships arose which still exist today. Today after 25 years we are in the beautiful Bad Neuenahr-Ahrweiler in the Dorint Parkhotel at the Dahliengarten. Not just like that, no, but to a very special meeting with families from many countries and many experts.

Exactly according to our motto "Together," Together we, the association Cornelia de Lange syndroom Netherlands & Belgium and the working group Cornelia-de-Lange-Syndrom e.V. Germany, have planned this year's world conference over many hours. Families and experts share their experiences and develop new ideas in order to gain insights and to be able to deal better with difficult situations in everyday life. We want to celebrate together and experience friendship, security and openness.

I wish us all an unforgettable 10th World Conference 2019 in Bad Neuenahr-Ahrweiler with many experiences and experiences which we all take home to make our lives a little easier.

signature.png

Jürgen Kegel
1.Vorsitzender
Arbeitskreis Cornelia-de-Lange-Syndrom e.V.

Picture of GerritjanKoekkoek

Dear families and participants of the 10th World Conference!

We are very pleased to welcome you in Bad Neuenahr-Ahrweiler at the Dorint-Hotel.

When our son, Rai, was born in November 1999, he was diagnosed with Cornelia de Lange syndrome. The internet was just emerging and the information about SCdL was horrible. There was just one address with hopeful (full of hope!) information; the SCdL Foundation in the USA. We sent them a letter for support. This was such a great experience to find support when most needed, from people who knew what was needed. They informed us about a group of parents in our home country, The Netherlands. At that time there was no information in Dutch (our language) about the Cornelia de Lange syndrome on the Internet.

Life with Rai took our family life on a rollercoaster! Frightening experiences, but also experiences of immense pleasure. One experience that will always stay with us was our first meeting at a family gathering. As a new family we were warmly greeted by a lovely, friendly girl with SCdL. She was immediately drawn to Rai and was full of joy. Rianne; you and your parents are still in our heart.

Of course we joined the family group and have visited the family gatherings each year ever since. We believe, and experienced, that being with others makes you so much stronger. And hearing the stories, sharing our best practices, finding the experts that are recommended by these parents, having a listening ear when you ask to people that 'just get it'. 

Rai suffered from Reflux very badly. We decided that Rai and myself would travel to Italy to find support. In Italy there was the world conference of that year. We were greeted by Ulla. A warm welcome by Angelo Selicorni. He recommended that I should talk to Dr. Lugani from Milan. This 1:1 consultation turned out to be a very important milestone for Rai. He never suffered from Reflux or side-effects of the medication after we followed his advice.

It shows clearly what I hope you, as a visitor to this conference, will experience; meeting beautiful people like Rianna and her parents, her brothers and her sisters, finding support from the best experts in the world and experiencing the strength of the SCdL World community.

I always say, we all know something !
Together we know everything!

I wish us all an unforgettable 10th World Conference 2019 in Bad Neuenahr-Ahrweiler with many experiences and experiences which we all take home to make our lives a little easier.

signature.png

Gerritjan Koekkoek
Chairman and supporter of CdLS World
Vereniging Cornelia de Lange syndroom

We want to make this conference as affordable for the families as possible, therefore 

WE NEED YOUR SUPPORT!

We will incur costs for simultaneously translations, child care, venue costs, meals, die volunteers, info material and organization. Our total budget will be approx. 150.000€, of which we can carry about 50.000€ ourselves. Your contribution will help to reduce the registration costs for the family and therefore reduce their burden. The controlling is handled by our treasurer to make sure that your contribution is used correctly. 

You can make a big difference for these families.
 

Help us to make this conference for the children and families a giant success.

Or donate directly to:

Bank: Sparkasse Starkenburg
IBAN: DE98 5095 1469 0008 0560 01
BIC: HELADEF1HEP
Reason for transfer: CdLS Weltkonferenz 2019

Organized by

We are very happy that we are supported by many partners. All parters are valuable to us; If you like to contribute, support or sponsor our conference? You will make a difference for our global community!

Our organizing team

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.

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.

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.

Gerritjan Koekkoek

Father of Rai

He is father of Rai (CdLS, November 1999). Motivated to know all you need to know about CdLS he joined the dutch 'vereniging Cornelia de Lange syndroom' and became chairman of this group in 2008. In Buenos Aires at the world conference about CdLS in Argentina he was elected chairman of the CdLS World federation. 

Gerritjan is an Information Architect. Within the CdLS World federation executive council he is especially advocating the role of family members and the CdLS Patients so they are involved in Knowledge Development and sharing their experience with other family members, professionals or researchers.

Gerritjan is currently past-chairman in the CdLS World Federation Council executive team and chairman of the dutch 'vereniging cdls' 

Marcel Scharphof

Vader van Sophie

Jürgen Kegel

Father of Christian

Jürgen is chairman of the German 'Arbeitskreis Cornelia de Lange Syndrom e.V.' 

Annette Gensler

Roman Kopf

Roman, of the M:Con conference support team, is advising and supporting the team with the experience of M:Con

Kent Kleinsteuber

Father of Susanna

Kent Kleinsteuber

Father of Susanna

Lars van der Meer

Lars is the brother of Finn (CdLS). He studies and loves music and music performances. Lars wants to help, so as Manu as possible people can enjoy this conference

Ingrid Benoist

Ingrid supports the World Conference as a volunteer. She will help to bring the family perspective in the program and keep you updated about the event

Kjell van der Meer

Brother of Finn

Christina Gensler

Sister of Eva

Michael Schultheis

Volunteer

About the website contents

All of the information contained within these questions and answers 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, contact see below.