2. KOSICE September 20041 KOURIR association

3. KOSICE September 20042 The KOURIR association  Presentation of KOURIR  Objectives n Information - Communication n Research n Actions for children and parents

4. KOSICE September 20043 Presentation of KOURIR  KOURIR is the french parent association for n Various forms of JIA n Lupus(SLA), spondylarthritis, sarcoidosis...  Founded in 1992  Board of 15 members  around 500 members  Budget 2002 : around 50000 euros

5. KOSICE September 20044 Information and communication l General information and sensibilisation on the disease and the association towards n concerned parents n health professionals n autorities n public l Specific information for the parents : medical, social... l National and international events

6. KOSICE September 20045 Income distribution (Year 2000)

7. KOSICE September 20046 Sponsoring

8. KOSICE September 20047 Informations ressources  Bulletin : 3 to 4 times / year  Web site : www.kourir.org www.kourir.org  Discussion list in french : acj@yahoogroupes.com acj@yahoogroupes.com  Brochures n General information on JIA L’arthrite Chronique Juvénile n Information for teachers Quand votre élève a de l’arthrite n Information for children Histoires d’enfant (for year 3 – 8) Tu me racontes l'A.C.J. ? (for year 6 -12) n Information for physiotherapists  Parents directory

9. KOSICE September 20048 Research  KOURIR promotes and funds research on JIA n Clinical research –Epidemiologic research –Growth hormone n Basic research –ADN bank –KOURIR award –Scientific committee  KOURIR is associated with ARP (Association de Recherche sur la Polyarthrite)  Scientific committee (2002) UTRECHT 2001 STRESA 2003 STOCKHOLM 2002

10. KOSICE September 20049 Actions for children and parents  Gifts for children in hospital  Support networks  Emergency funds  Lobbying n Ministry of health and education n EEC (via Eurordis) for rare disease and orphan drugs n Association with »Alliance Maladies rares »  Organisation of meetings between parents

11. KOSICE September 200410 Actions for children