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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

15

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

theboard@aoecs.orgtheboard@aoecs.org

allmembers@aoecs.orgallmembers@aoecs.org

Youth: Youth:

cye.board@gmail.comcye.board@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: info@celiacscatalunya.org 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: acm@celiacosmadrid.org 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: afdiag@yahoo.fr web: www.afdiag.org

GreeceMaria Pateraki Platia Anexartisias 10 16344 ILIOYPOLI ATENE - GreeceTel: +30 210 97 37 956e-mail: koiliokaki@koiliokaki.com 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: office@celiac.org.il 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: edros@global.net.mt

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: drustvo@drustvo-celiakija.si 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 segreteria@celiachia.it

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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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