AOECS Association of European Coeliac Societies

AOECS Umbrella organisation of national European Coeliac Societies

AOECS Founded in Rome (Italy), 1988 36 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

AOECS Represents coeliac patients of Europe Reviews problems of international importance Coordinates international activities and matters Partner of scientific projects

AOECS Chaired by Board of 5 Directors: Christian Scerri, Malta, president Jean-Louis Kieffer, Luxembourg Tunde Koltai, Hungary Susan Phillips, Italy Sarah Sleet, United Kingdom

AOECS Working Groups 1. Helping Coeliacs & Consumer Affaires 2. Statutes 3. Research 4. Coeliac Youth of Europe

International Trade mark ® Registered by Coeliac UK and AOECS

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European Licensing System

European 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 Symbol Provides 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

Helping Coeliacs and Consumer Affaires 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

International Coeliac Day Goals 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’

International Coeliac Day Target 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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Coeliacs 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

Regional 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

Regional 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

Partner of EU-funded projects AOECS is partner of 2 EU-funded scientific projects: PREVENT CD CDMEDICS

PREVENT 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

CDMEDICS Coeliac Disease management monitoring and diagnosis - using biosensors and an integrated chip system www.cdmedics.eu

CDMEDICS Pamphlet for doctors and healthcare professionals www.cdmedics.eu

Contacts: www.aoecs.org theboard@aoecs.org allmembers@aoecs.org Youth: cye.board@gmail.com

2 members of AOECS (F.A.C.E. and SMAP) Report April 5th 2011 CELIAC SOCIETIES IN THE MEDITERRANEAN NETWORK MEDICEL Country N. Members Organization Notes Albania no society   Algeria Slovenia one 2000 national 8 regional member of AOECS Bosnia more 300 1/canton =10 Croatia 1000 national 3 regional member of AOECS? Egypt France 6500 national member of AOECS  Greece 1300 2 members of AOECS Istrael 10.000 Italy 100.000 national + 20 regional Lebanon Lybia Malta 450 1 national Morocco Siria Spain 25 regional 2  members of AOECS (F.A.C.E. and SMAP) Tunisia Turkey

Spain Contact person: Ms Matilde Torralba Celiacs de Catalunya - SMAP Balmes 109, PRINCIPAL 2A 08008 Barcelona Tel: +34 93 412 17 89 Fax:+34 93 412 03 82 e-mail: info@celiacscatalunya.org web: www.celiacscatalunya.org Contact person: Mr Carlos Bravo FACE C/Hileras 4,5° 1° E-28013 Madrid Tel: +34 91 547 54 11 Fax:+34 91 541 06 64 e-mail: acm@celiacosmadrid.org web: www.celiacosmadrid.org France Contac person: Mme Catherine Remillieux- Rast A.F.D.I.A.G. 15 Rue d' Hauteville, 7 5015 Paris - FRANCE Tel+33 1 56 08 08 22 Fax:+33 1 56 08 08 42 e-mail: afdiag@yahoo.fr web: www.afdiag.org Greece Maria Pateraki Platia Anexartisias 10 16344 I LIOYPOLI ATENE - Greece Tel: +30 210 97 37 956 e-mail: koiliokaki@koiliokaki.com web: www.koiliokaki.gr/ Malta Contact person: Mary Rose Caruana Coeliac Association Malta Lumut 60 Fuq il-Gonna, Swieqi SWQ 3526 MALTA Tel+356 21 370 778 Fax:+356 7937 0778 e-mail: edros@global.net.mt Israel Contact person: Mr Rakefet Sheffer The Coeliac Association of Israel 40 Habiluyim St., Ramat Gan 52297 - ISRAEL Tel: +972 3 6781481 e-mail: office@celiac.org.il web: www.celiac.org.il Slovenia Contact person: Mr Breda Kojc Slovensko Drustvo za Celiakijo Ljubljanska ul. 5, 2000 Maribor - SLOVENIA Tel+386 (0)62 300 6350 Fax:+386(0)62 300 6350 e-mail: drustvo@drustvo-celiakija.si web: www.drustvo-celiakija.si Turkey Çölyakla Yaşam Derneği olarak Eminali Paşa Cad. Kibar Apt. No: 1 D: 5 Altıntepe, Küçükyalı Maltepe, İstanbul Turkey Telefon : 0216 388 38 02 / Faks : 0216 388 38 07 AIC Italy Via Caffaro 68 A/rosso – 16124 GENOVA Tel. 010 2510016 Fax 010 2721615 e-mail segreteria@celiachia.it Morocco Association des Coeliaques de Tanger 2 Rue de la Haye, 3eme etageTanger - MOROCCO Tel+212 9 93 51 36

8th September 2011 Welcome in Malta MEDICEL – PREVENTCD – CDMEDICS Workshop AOECS GA 9 – 11 September 2011

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