KOURIRANTON GRUSS

VICE PRESIDENT

Association KOURIR9, rue de Nemours

75011 PARIS Tél :  +33 (0)1 40 03 03 02E-mail : contact@kourir.org

www.kourir.org

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BACKGROUND KOURIR is the french parent association for JIA and all kinds of

pediatric rheumatic diseases Established in 1992 as a non profit association Board of up to 15 administrators with a president, vice presidents,

secretary, treasurer 25 local representatives Around 400 members, mainly parents (membership fee 35 €) Budget 2015 : around 100 000 € Mission

• Support to parents and children• Increase JIA awareness at local, national and international level• Promote research on JIA

Organisation • driven by parents and some adolescents• logistics mutualized in partnership with AFPric

ENCA meeting - Genoa - September 2016

INFORMATION AND COMMUNICATION General info and rheumatic pediatric diseases for:

• Concerned parents and children• Health professionnals• Public authorities• General public

Participation to local, national and international events

Participation to collective associations :• Alliance Maladies Rares

• EURORDIS

• European Network for Children with Arthritis 3ENCA meeting - Genoa - September 2016

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INFORMATION AND COMMUNICATION

Brochures • General information on JIA• Information for teachers • Information for children (3-8 and 6-12)• Information for physiotherapists

ENCA meeting - Genoa - September 2016

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INFORMATION AND COMMUNICATIONDigital medias

Website www.kourir.org developed by a parent Newsletter Open Forum on google groups on JIA in french Social media:

• Twitter https://twitter.com/kourirfrance?lang=fr • Facebook https://www.facebook.com/kourir.france?fref=ts • YouTube https://www.youtube.com/c/buroKourirvid%C3%A9os

Co organisation of webinars with health professionals Physical meetings every 2 months and online meetings every

month using phone or google hangout Support of the ENCA website www.enca.org and forum

ENCA meeting - Genoa - September 2016

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SERVICES TO PARENTS

Help line by phone and emailOrganisation of awareness and financial support

eventsOrganisation of patient/family conferences (local

and national)Organisation of outings for children

(Centerparcs, Disney...)

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SUPPORT TO RESEARCH

KOURIR awards since 2005

Co-funding of small research projects in France

BELGRADE 2014

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Thank you for your attention

ENCA meeting - Genoa - September 2016