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KOSICE September 20041 KOURIR association KOSICE September 20042 The KOURIR association  Presentation of KOURIR  Objectives n Information - Communication.

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Presentation on theme: "KOSICE September 20041 KOURIR association KOSICE September 20042 The KOURIR association  Presentation of KOURIR  Objectives n Information - Communication."— Presentation transcript:

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2 KOSICE September KOURIR association

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

4 KOSICE September 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 euros

5 KOSICE September 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 Income distribution (Year 2000)

7 KOSICE September Sponsoring

8 KOSICE September Informations ressources  Bulletin : 3 to 4 times / year  Web site :  Discussion list in french :  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 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 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 Actions for children


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