AOECS Association of European Coeliac Societies 1

AOECS Association of European Coeliac Societies 1

AOECS Umbrella organisation of national European Coeliac Societies 2

AOECS ü Founded in Rome (Italy), 1988 ü 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 3

AOECS ü Represents coeliac patients of Europe ü Reviews problems of international importance ü Coordinates international activities and matters ü Partner of scientific projects 4

AOECS Chaired by Board of 5 Directors: üChristian Scerri, Malta, president üJean-Louis Kieffer, Luxembourg üTunde Koltai, Hungary üSusan Phillips, Italy üSarah Sleet, United Kingdom 5

AOECS Working Groups 1. Helping Coeliacs & Consumer Affaires 2. Statutes 3. Research 4. Coeliac Youth of Europe 6

International Trade mark ® Registered by Coeliac UK and AOECS 7

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European Licensing System 9

European Licensing System ü The European Charta was accepted in 2009 in Malta by the General Assembly ü 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 ü 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 10

Helping Coeliacs and Consumer Affaires Helping Coeliacs • • Involve coeliac societies of all European countries Help new societies in the „missing” countries (Handbook) Consumer affaires • • „Equal chance, equality of life for coeliacs in Europe” Spread out information about the new Codex and EUregulation (41/2009) about the composition and labelling of foodstuffs suitable for people intolerant to 11 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 otherapy 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’ 12

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. . 13

2006 14

2007 15

2008 16

2009 17

Coeliacs for Coeliacs ü First action in 2006 and 2007 ü Fundraising - co-operation with producers ü Collected money used for projects - Lithuania: screening - Regional Conference of Central-East-European coeliac associations 18

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 19

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 20

Partner of EU-funded projects AOECS is partner of 2 EU-funded scientific projects: PREVENT CD CDMEDICS 21

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 22

CDMEDICS Coeliac Disease management monitoring and diagnosis - using biosensors and an integrated chip system www. cdmedics. eu 23

CDMEDICS Pamphlet for doctors and healthcare professionals www. cdmedics. eu 24

Contacts: www. aoecs. org theboard@aoecs. org allmembers@aoecs. org Youth: cye. board@gmail. com 25

Report April 5 th 2011 CELIAC SOCIETIES IN THE MEDITERRANEAN NETWORK MEDICEL Country N. Members Organization Notes Albania Algeria no society Slovenia one 2000 national 8 regional member of AOECS Bosnia more 300 1/canton =10 member of AOECS Croatia one 1000 national 3 regional member of AOECS? Egypt France Greece Istrael no society one one 6500 1300 10. 000 national Italy one 100. 000 national + 20 regional Lebanon Lybia Malta Morocco Siria no society one no society 450 1 national Spain more 25 regional Tunisia Turkey no society one member of AOECS 2 members of AOECS (F. A. C. E. and SMAP) 26

Spain Contact person: Ms Matilde Torralba Celiacs de Catalunya - SMAP Balmes 109, PRINCIPAL 2 A 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 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 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 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 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 Morocco Association des Coeliaques de Tanger 2 Rue de la Haye, 3 eme etage. Tanger - MOROCCO Tel+212 9 93 51 36 27

8 th September 2011 Welcome in Malta MEDICEL – PREVENTCD – CDMEDICS Workshop AOECS GA 9 – 11 September 2011 28

OUR COMMON CHALLANGE 29

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