WHO ARE WE ?
The Koolen De Vries France association was created on the initiative of parents of children with Koolen De Vries syndrome. Its purpose is to improve the health and life course of people with Koolen De Vries syndrome and their families.
For this, it sets itself the priority goals:
• To help, support and inform people with Koolen De Vries syndrome and their families
• Connect families and people with Koolen De Vries syndrome.
But also :
• To make the syndrome known to the general public.
• To represent people with the syndrome before the public authorities.
• Encourage research on this disease in particular and on rare diseases in general.
Koolen De Vries France is an association law 1901. It is governed by statutes . The resources of the association come from contributions and donations. An association only exists if it has members. The members are the strength of an association. Anyone concerned or feeling concerned by the association can be a member. If you want to join, come to our Membership page at Koolen De Vries France .
Donations are important too. They are essential for the success of our project. They represent a significant part of our income. All the money is put at the service of people with the syndrome. To make a donation, you can go to our Donate to Koolen De Vries France page .
Sébastien Détourné, President,
father of a daughter born in 2013, youngest of two children.
Angelique Soup, Treasurer,
mother of a daughter born in 2012, child of a sibling of two children.
Sabine Beaulieu, Secretary,
mother of a girl born in 2000, eldest sibling of two children.
David CHAIX, Assistant Secretary,
father of a young girl born in 2004, eldest in a family of two children.
Coralie Dorléans-Nicoly, active member of the board,
mother of a boy born in 2016, twin of a child not affected by the syndrome.
Leslie Hauquin, active member of the board,
mother of a daughter born in 2016, 4th child of 5.
Justine Lautier, active member of the board,
mother of a boy born in 2014, 2nd child of a sibling of 3.