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10th WORLD CONFERENCE CORNELIA DE LANGE SYNDROME 2019
| Germany | the Netherlands |
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Welcome
THE 10TH BI-ANNUAL CONFERENCE FOR THE CDLS WORLD FEDERATION WILL TAKE PLACE IN GERMANY
BAD NEUENAHR-AHRWEILER
JULY 31 - AUGUST 04, 2019
On behalf of the Arbeitskreis Cornelia de Lange-Syndrom e.V. (Germany) and the vereniging Cornelia de Lange syndroom (The Netherlands and Belgium), we will be delighted to welcome families, professionals and supporters to this event in one of Germany’s most beautiful countryside conference centers.
We work hard...
The Arbeitskreis Cornelia de Lange-Syndrom e.V. and the vereniging Cornelia de Lange syndroom have worked closely together with the world federation to provide the venue and the program for this important event.
The families throughout our two countries are working hard to raise funds to support the conference and the cost of bringing the top medical, clinical, scientific and social care professionals together in one place.
We hope that many families and professionals will take the opportunity to have an extended vacation to discover more of Europe before or after the World Federation Conference.
Most of all we hope that people attending – whether they be parents, grandparents, siblings, doctors, teachers, social workers, community care support staff and the people with CdLS themselves, will have fun. We believe that by meeting together to share common thinking and new ideas we will make the world a better place for people with CdLS.
Jürgen and Gerritjan
Jürgen Kegel
Father of Christian
Jürgen is chairman of the German 'Arbeitskreis Cornelia de Lange Syndrom e.V.'
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'
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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.
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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.
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.
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.
The location
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“.
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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.
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Contact information
Netherlands and Belgium
vereniging Cornelia de Lange syndroom
Larixlaan 21
7031 WG Wehl
vereniging@cdlsworld.org
germany
Arbeitskreis Cornelia de Lange - Syndrom e. V.
Ober-Liebersbach 27
68509 Mörlenbach
info@corneliadelange.de
CdLS World federation
www.cdlsworld.org
