The association​
The Koolen De Vries France association was recognized as being of general interest by the Departmental Directorate of Public Finances of the Somme on July 29, 2019. As such, it can issue tax receipts and allow you to benefit from a tax reduction equal to 66% of the amount of your donation, within the limit of 20% of your taxable income if you are an individual and 60% up to to € 2 million if you are a corporate sponsor.
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 .
Board of directors
Justine Lautier
active member
Mom of a Kool Kid born in 2014, 2nd of 3 siblings.
Support during events
Sebastien Diverted
President
Dad of a Kool Kid born in 2013, youngest of 2 siblings.
Referent Alliance Maladies Rares and Valentin APAC
Public relations
Organization of local events
Referent sending testimonial books, Facebook pages (Parents, KDVF and Coin des Pros) and geolocation map
Magali Chaix
Treasurer
Mother of a Kool Kid born in 2004, eldest of 2 siblings.
Organizes local events and family reunions
T-shirts sales referent
Participates in the creation of tools for the association
Aurore Le Jacq
Coralie Nicoly
active member
Mother of a Kool Kid born in 2016, twin of a child not affected by the syndrome.
Support during events
David Chaix
Assistant Secretary
Dad of a Kool Kid born in 2004, eldest of 2 siblings.
AndDDI-Rares Referent
Organizes local events and family reunions
Manage members and donors
Sales referent T-shirts and Hand Ball tickets
Participates in the creation of tools for the association
Claire Volkmann-Pedeloste
Secrétaire
Carine Vasseur
active member
Mom of a Kool Kid born in 2016, youngest of 2 siblings.
Creation of communication tools
Support during events
Justine Lautier
active member
Mom of a Kool Kid born in 2014, 2nd of 3 siblings.
Support during events
Leslie Hauquin
active member
Mother of a Kool Kid born in 2016, eldest of 2 siblings.
Manages the Facebook Parents page
Family relations expert/MDPH
Support during events
Justine Lautier
active member
Mom of a Kool Kid born in 2014, 2nd of 3 siblings.
Support during events
The reports
Sep. 2021
May 2021
May 2021
March 2021
Dec. 2020