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You are the parent of a Kool Kid, you can exchange with other families on:

In addition to this, you will need to know more about it.

Koolen de Vries France - 17q21.31 microdeletion or KANSL1 gene mutation

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The association chain

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Association Koolen de Vries France the corner of the pros

Our partners

Valentin APAC association

Valentin Association of Carriers of Chromosomal Anomalies

Association which groups together and helps people confronted, directly or indirectly, with the various problems posed by anomalies in the structure or number of chromosomes (example: translocation, inversion, deletion, partial or complete trisomies, partial monosomies or complete, and others)

Contact information :

52, La Butte Eglantine


The Association Rare Disease Alliance

Created on February 24, 2000, the Alliance Rare Diseases (association law 1901) brings together today more than 200 patient associations. It represents nearly 2 million patients and around 2,000 rare diseases. It also welcomes isolated patients and families, "orphans" of associations.




Unique is a UK-based charity that works worldwide to inform, support and network all families affected by rare chromosomal disorders.

They were the first to create a guide to Koolen De Vries syndrome. We are currently working with them on the French translation of their latest version.

They also organized a seminar in Leeds from September 30 to October 2, 2016 where many families from the United Kingdom, the United States, Italy, Belgium, Spain and France met with conferences on the Koolen De Vries syndrome: genetic presentation of the syndrome by Doctor Koolen and his team, lectures on language and sleep disorders.

You can learn about all of their activities and goals through their social media platforms like their public Facebook page, Twitter and Instagram.