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AOECSAOECSAssociation
of
European Coeliac Societies
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AOECSAOECS
Umbrella organisation
of national
European Coeliac Societies
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AOECSAOECS
Founded in Rome (Italy), 198836 members from 32 countries:
Andorra, Austria, Belgium, Bosnia, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Luxembourg, Malta, Montenegro, Netherlands, Norway, Poland, Portugal, Romania, Russia, Serbia, Slovenia, Spain, Sweden, Switzerland, UK, Ukraina
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AOECSAOECS
Represents coeliac patients of EuropeReviews problems of international
importanceCoordinates international activities and
mattersPartner of scientific projects
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AOECSAOECS
Chaired by Board of 5 Directors:
Christian Scerri, Malta, presidentJean-Louis Kieffer, Luxembourg Tunde Koltai, Hungary Susan Phillips, ItalySarah Sleet, United Kingdom
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AOECSAOECS
Working Groups
1. Helping Coeliacs & Consumer Affaires
2. Statutes
3. Research
4. Coeliac Youth of
Europe
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International Trade markInternational Trade mark
Registered by Coeliac UK and AOECS
®
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European LicenEuropean Licenssing Systeming System
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European Licensing SystemEuropean Licensing System
The European Charta was accepted in 2009 in Malta by the General Assembly
Regulates the use of the Crossed Grain Symbol on food products within Europe• providing unified licensing conditions• having more food products available across
Europe featuring the SymbolProvides the highest possible guarantee for
coeliacs as are communicating that the products• comply with the AOECS Standard • are guaranteed inside the country• are guaranteed in the whole AOECS territory
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Helping Coeliacs and Helping Coeliacs and Consumer AffairesConsumer Affaires
Helping Coeliacs• Involve coeliac societies of all European countries• Help new societies in the „missing” countries
(Handbook)
Consumer affaires• „Equal chance, equal quality of life for coeliacs in
Europe” • Spread out information about the new Codex and EU-
regulation (41/2009) about the composition and labelling of foodstuffs suitable for people intolerant to gluten
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International Coeliac DayInternational Coeliac DayGoalsGoals• Create/increase awareness for the
whole/enlarged spectrum of gluten sensitivity• Decrease the huge number of the undiagnosed
and misdiagnosed cases• Coeliac/gluten sensitive patients have (yet) no
other therapy only the strict glutenfree diet • Support diagnosed patients and their families• Increase compliance of the (right) diagnosis• Maintain a strong network = European and
national coeliac societies, providing correct and up-to-date information about ‘glutenfree lifestyle’
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International Coeliac DayInternational Coeliac DayTarget groupsTarget groups• General public• Potential patients in Europe:
– Coeliac disease: 1% = 7 million people– Gluten sensitivity: 5 - 6 % = abt. 40 million people
• Diagnosed and potential patients + their families and friends
• Healthcare professionals (family doctors, general practitioners, different specialists, nurses, dieteticians etc.)
• Politicians• Others: shop owners, hypermarket chaines, food
producers, caterers, resaurants and hotels, etc....
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20062006
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20072007
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20082008
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20092009
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Coeliacs for CoeliacsCoeliacs for Coeliacs
First action in 2006 and 2007
Fundraising - co-operation with producers
Collected money used for projects
- Lithuania: screening
- Regional Conference of Central-East-European
coeliac associations
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Regional ConferenceRegional Conference
Central/Eastern Europe:- Awareness is very low (in general population,
among politicians and healthcare professionals)- Missing or limited financial support - Mentality of people is similar (they don't have
social “we” feeling, exclude others, deal with their own problems, etc.)
- People need strong messages, symbols/pictures and international support
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Regional ConferenceRegional Conference
Specific problems– low-income employees and families– retired (old) people– unemployed patients– students– healthcare professionals in training– local producers of GF products– patients’ associations for being able to
provide services and support patients
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Partner of EU-fundedPartner of EU-funded projects projects
AOECS is partner of 2 EU-funded scientific projects:
PREVENT CD
CDMEDICS
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PREVENT CDPREVENT CD
'Prevention is better than cure'
European scientific research project to prevent coeliac disease.
The project studies the influence of the dietary history in the prevention of coeliac disease: possibilities of induction of tolerance for gluten in genetic predisposed children for
coeliac disease.
www.preventcoeliacdisease.com
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CDMEDICSCDMEDICS
Coeliac Disease management monitoring
and diagnosis - using biosensors and
an integrated chip system
www.cdmedics.eu
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CDMEDICS Pamphlet for doctors and healthcare professionals
www.cdmedics.eu
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www.aoecs.orgwww.aoecs.org
[email protected]@aoecs.org
[email protected]@aoecs.org
Youth: Youth:
[email protected]@gmail.com
Contacts:Contacts:
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Report April 5th 2011
CCELIAC SOCIETIES IN THE MEDITERRANEAN ELIAC SOCIETIES IN THE MEDITERRANEAN NETWORK MEDICELNETWORK MEDICEL
Country N. Members Organization NotesAlbania no society Algeria no society
Slovenia one 2000 national 8 regionalmember of AOECS
Bosnia more 300 1/canton =10 member of AOECS
Croatia one 1000 national 3 regional member of AOECS?
Egypt no society France one 6500 national member of AOECS Greece one 1300 national 2 members of AOECSIstrael one 10.000 national
Italy one 100.000 national + 20 regionalmember of AOECS
Lebanon no society
Lybia no society
Malta one 450 1 national member of AOECS
Morocco no society Siria no society
Spain more 25 regional2 members of AOECS (F.A.C.E. and SMAP)
Tunisia no society Turkey one
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SpainContact person: Ms Matilde Torralba Celiacs de Catalunya - SMAP Balmes 109, PRINCIPAL 2A 08008 BarcelonaTel: +34 93 412 17 89Fax:+34 93 412 03 82e-mail: [email protected] web: www.celiacscatalunya.org
Contact person: Mr Carlos BravoFACE C/Hileras 4,5° 1° E-28013 Madrid Tel: +34 91 547 54 11Fax:+34 91 541 06 64e-mail: [email protected] web: www.celiacosmadrid.org
FranceContac person: Mme Catherine Remillieux- RastA.F.D.I.A.G. 15 Rue d' Hauteville, 75015 Paris - FRANCETel+33 1 56 08 08 22Fax:+33 1 56 08 08 42e-mail: [email protected] web: www.afdiag.org
GreeceMaria Pateraki Platia Anexartisias 10 16344 ILIOYPOLI ATENE - GreeceTel: +30 210 97 37 956e-mail: [email protected] web: www.koiliokaki.gr/
IsraelContact person: Mr Rakefet Sheffer The Coeliac Association of Israel 40 Habiluyim St., Ramat Gan 52297 - ISRAELTel: +972 3 6781481e-mail: [email protected] web: www.celiac.org.il
MaltaContact person: Mary Rose CaruanaCoeliac Association Malta Lumut 60 Fuq il-Gonna,Swieqi SWQ 3526 MALTATel+356 21 370 778Fax:+356 7937 0778e-mail: [email protected]
MoroccoAssociation des Coeliaques de Tanger 2 Rue de la Haye, 3eme etageTanger - MOROCCOTel+212 9 93 51 36
SloveniaContact person: Mr Breda Kojc Slovensko Drustvo za Celiakijo Ljubljanska ul. 5, 2000 Maribor - SLOVENIATel+386 (0)62 300 6350Fax:+386(0)62 300 6350e-mail: [email protected] web: www.drustvo-celiakija.si
TurkeyÇölyakla Yaşam Derneği olarakEminali Paşa Cad. Kibar Apt. No: 1 D: 5 Altıntepe, Küçükyalı Maltepe, İstanbul TurkeyTelefon : 0216 388 38 02 / Faks : 0216 388 38 07
AIC ItalyVia Caffaro 68 A/rosso – 16124 GENOVATel. 010 2510016Fax 010 2721615e-mail [email protected]
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8th September 20118th September 2011
Welcome in Malta
MEDICEL – PREVENTCD – CDMEDICS
Workshop
AOECS GA 9 – 11 September 2011
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OUR COMMON CHALLANGEOUR COMMON CHALLANGE
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