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       The KOURIR association

 

 

KOURIR is the only french association for parents of children with Juvenile Idiopathic Arthritis other pediatric rheumatic diseases.

Status

It is a non profit organisation, independant from adult associations, it was founded in 1992 from a group of parents.
 It has now around 400 parents for an estimated 5000 children with JIA in France.

The board of 15 members is elected during the AGM and meets almost every month in the office hired in Paris.

A full time employee takes care of phone calls and adminstrative tasks.

Budget

KOURIR has an annual budget of around 50000 euros.

It doesn't receive any subsidies from the government, its income comes only from subscriptions, donations and sponsoring

Three main objectives

  1. Information

  2. Research

  3. Actions for children and parents

1 Information

General information and sensibilisation on the disease towards

-parents and children
-health professionals
-authorities
-general public

KOURIR publishes a bulletin 3 to 4 times a year, and has several leaflets for specific problems :

- General information for parents on the disease
- Information for kids 6-12 and 10-16
- Information for teachers
- Information for physiotherapists

2 Research

KOURIR promotes and funds research on JIA and related diseases either alone or in collboration with the ARP foundation (Association de Recherhce sur la Polyarthrite).
Since 2002 KOURIR has its own scientific committee.

Studies or projects already funded :

- Epidemiological research (Ecole de Santé puiblique, Nancy)
- Growth hormone study (Robert Debré Hospital, Paris)
- DNA bank (Necker Hospital, Paris)

Since 2001, KOURIR, with the help of Schering-Plough laboratories, promotes research in pediatric rheumatology at international level through the "KOURIR award", a prize given every year during the PRES conference.
 

 

In 2005, with the help of PRES, KOURIR will offer a Grant to fund a project.

3 Actions for children and parents

Disneyland® ParkKOURIR organizes meetings at national and local levels between parents, as well as outings for children, as the next one taking place at Disneyland Paris

 

 

KOURIR participates to lobbying actions alone or together with other french associations.

International actions

KOURIR is member of EURORDIS, (European organisation for rare diseases) and takes an active part in ENCA in order to exchange experience with other european groups.

 

Contact :

Anton GRUSS
Tel :+33 438783725
Email : kourir@free.fr