enca 2016 - genoa - anton gruss
TRANSCRIPT
KOURIRANTON GRUSS
VICE PRESIDENT
Association KOURIR9, rue de Nemours
75011 PARIS Tél : +33 (0)1 40 03 03 02E-mail : [email protected]
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...)
ENCA meeting - Genoa - September 2016
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SUPPORT TO RESEARCH
KOURIR awards since 2005
Co-funding of small research projects in France
BELGRADE 2014
ENCA meeting - Genoa - September 2016
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Thank you for your attention
ENCA meeting - Genoa - September 2016