The KOURIR association

1. KOURIR
ANTON GRUSS
VICE PRESIDENT
Association KOURIR
9, rue de Nemours
75011 PARIS
Tél : +33 (0)1 40 03 03 02
E-mail : contact@kourir.org
www.kourir.org

2. 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
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3. 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
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4. INFORMATION AND COMMUNICATION
Brochures
• General information on JIA
• Information for teachers
• Information for children (3-8 and 6-12)
• Information for physiotherapists
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5. INFORMATION AND COMMUNICATION
Digital 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
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6. SERVICES TO PARENTS
Help line by phone and email
Organisation of awareness and financial support
events
Organisation of patient/family conferences (local
and national)
Organisation of outings for children
(Centerparcs, Disney...)
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7. SUPPORT TO RESEARCH
KOURIR awards since 2005
Co-funding of small research projects in
France
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BELGRADE
2014
ENCA meeting - Genoa - September 2016

8. Thank you for your attention
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