9 rue Molière
80470 Ailly sur Somme
Tél. : 03 22 48 31 98
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La page de l'association
Vous êtes parent d'un Kool Kid, vous pouvez échanger avec d'autres familles sur :
Koolen de Vries France - microdélétion17q21.31 ou mutation du gène KANSL1
La chaîne de l’association
Vous êtes professionnel santé ou éducatif auprès d'un d'un Kool Kid, vous pouvez échanger avec d'autres professionnels sur :
Association Koolen de Vries France le coin des 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.