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Closed Cornelia de Lange Sydrome World Conference 2019 - Support Families

A project from Arbeitskreis Cornelia de Lange Syndrom e.V.
in Bad Neuenahr-Ahrweiler, Germany

TOGEHTER / ZUSAMMEN: 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.

K. Kleinsteuber
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About this project

10th Cornelia de Lange Syndrome World Conference
July 31 - August 4, 2019
Dorint Hotel
Bad Neuenahr-Ahrweiler
Germany

Motto: Together

Cornelia de Lange Syndrome (CdLS) is a seldom genetic disease (1:10,000-30,000), and is almost always a spontaneous mutation and most likely accompanied by mental and physical handicaps as well as behavior issues.

The CdLS World Federation invites families and leading experts from around the world to a conference every 2 years. In 2019 the organizations from the Netherlands " vereniging Cornelia de Lange Syndroom" and Germany "Arbeitskreis CdLS" will be the hosts. We are working completely voluntarily.
  

This conference offers the very unique opportunity for the families to meet with experts personally to discuss how to better understand and cope with their specific issues. The experts come from a variety of  disciplines, ie. Genetics, Behavioral studies, Gastroenterology, Dentistry, Nutrition, Developmental studies, Pain management, Communication.

The experts will hold lectures and be involved in workshops and will also be available to the families for personal consultations. This will be the largest gathering of experts in Germany and they will part their knowledge with other professionals and families.
 
Addtionally - and almost more important - this will be an opportunity for the families to meet each other in an atmosphere that only such a conference can offer, in order to be able to exchange personal experiences and feel understood, laugh and cry together and feel part of a larger community.

In order to make the children feel more comfortable, we will be offering 1:1 supervision for the children with CdLS. Care will be also offered to the Siblings and for the children older than 6, we will be organizing a recreation program.
 
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.

You can inform yourself about the planning and progress of the conference on our website.

About

betterplace.org is the largest German donation platform. Since 2007 we have been helping people, aid organizations and companies to do good. All projects on betterplace.org are non-profit. Since we ourselves also do not work for profit, our platform is free of charge for the projects.
2007founded
12,500non-profit organisations
185m €for a good cause
Initiative Transparente Zivilgesellschaft (Logo)

TOGEHTER / ZUSAMMEN: 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.

About this project

K. Kleinsteuber Write a message

What is needed

About

betterplace.org is the largest German donation platform. Since 2007 we have been helping people, aid organizations and companies to do good. All projects on betterplace.org are non-profit. Since we ourselves also do not work for profit, our platform is free of charge for the projects.
2007founded
12,500non-profit organisations
185m €for a good cause
Initiative Transparente Zivilgesellschaft (Logo)