WHO ARE WE ?

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 .

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Board of directors

Justine Lautier

active member

Mom of a Kool Kid born in 2014, 2nd of 3 siblings.

Support during events

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Justine Lautier

active member

Mom of a Kool Kid born in 2014, 2nd of 3 siblings.

Support during events

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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

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Sabine Beaulieu

Secretary

Mother of a Kool Kid born in 2000, eldest of 2 siblings.

Referent GenIDA and KDVF Foundation

Referent Facebook pages KDVF and Coin des Pros

Created and enriched the website

Manage members and donors

Participate in the creation of internal and external communication tools

Co-organized the Regroupement 2021

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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

Magali Chaix

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Coralie Nicoly

active member

Mother of a Kool Kid born in 2016, twin of a child not affected by the syndrome.

Support during events

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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

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Carine Vasseur

active member

Mom of a Kool Kid born in 2016, youngest of 2 siblings.

Creation of communication tools

Support during events 

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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