9 rue Molière
80470 Ailly sur Somme
Phone. : 03 22 48 31 98
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The association page
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
The association chain
You are a health or educational professional with a Kool Kid, you can discuss with other professionals on:
Association Koolen de Vries France the corner of the pros
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
95610 ERAGNY SUR OISE
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.