1. CD MEDICS MEDICEL Workshop „Patient first at the centre” 8 th September 2011 Malta

2. Europe Mediterranean area Algeria France Spain Turkey Slovenia Italy Croatia Montenegro Albania Greece Malta Israel Cyprus Egypt Tunesia Lybia Maroc Syria Lebanon Russia Ukraine Croatia Serbia

3. Helping Coeliacs Progress in the Development of National Coeliac Societies Tunde Koltai Hungarian Coeliac Society A O E C S

4. WHO WE ARE?

5. AOECS Umbrella organisation of national European coeliac societies 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, Ukraine

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

7. 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

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

9. Coeliac disease „Social disease” - lifelong condition Changed the general/professional opinion –more frequent 1:100 –not exclusively a childhood disease –difficult to diagnose atypical/silent/latent forms associated diseases, complications Rate of diagnosis: 1 : 5 – 1 : 20 ÷ 50 Special one: no cure, no medication vs. exclusive therapy=eating GF

10. Low awareness Low awareness European survey on knowledge about CD European survey on knowledge about CD (AOECS 2004) Gastroenterologists+ average (incl. Paediatric gastroenterologists) Paediatricians average Family doctors low Other specialists low cathegories: good/average/low

11. Patient first at the centre

12. Coeliac Patient DiagnosisDiet Healthcare/ social supports Science Food industry Family

13. Patient Long diagnostic period and way Lost in the healthcare system and feel alone The diagnosis is a milestone „Unexpected”diagnosis, „unknown” illness, „funny” treatment, „fad” diet Lifelong condition  compliance + lifelong learning Prevention of further complications Traditional eating habits have to be changed Quality of life is different (lower + more difficult) Gluten-sensitive patient = consumer

14. Coeliac Patient DiagnosisDietFamily Science Food industry Healthcare/ social supports

15. Diagnosis Important moment in patient’s life Diagnosis: frequent wrong and/or late ‘Case-finding’, screening of risk-groups, family- members - improving Co-operation of specialists: necessary and important Compliance is essential In case of refused treatment/diagnosis complications and new symptoms Dynamic improvement of diagnostic tools

16. Coeliac Patient DiagnosisDiet Science Food industry Healthcare/ social supports Family

17. Treatment = Diet Strict, lifelong diet = exclusion of gluten-containing cereals (wheat, rye and barley) Complicated/unknown/special - wheat flour is widely used by the food industry Limited availability of GF food High price of dietary products = costly diet Naturally GF foods: usually contaminated Codex Alimentarius and EU-regulations – world- and Europe-wide standard

18. Coeliac Patient DiagnosisDietFamily Science Food industry Healthcare/ social supports

19. Healthcare system Very low awareness/ untrained HCP Shorter diagnostic period/way = lower costs Screening policy (risk-groups, first degree relatives of coeliac patients) changed Patient care = regular follow-up + education  SUCCESS Co-operation with patients’ organisations Target: good health and better QoL of coeliacs

20. Social support Dietetic products are 3-10-times more expensive than the similar normal products Extra costs are not compensated Missing financial support  non-compliance  serious complications and illnesses Social support of recently diagnosed aged people is unsolved

21. Coeliac Patient DiagnosisDiet Healthcare/ social supports Family Science Food industry

22. Science Worldwide popular research topic (genetics, immunology, pharmaceutical industry, etc.) ESPGHAN, Prolamin Working Group, EU, etc. International conferences EU-funded projects: –Cluster Project –Prevent CD –CDMEDICS Threshold-research –Carlo Catassi et al.: Am J Clin Nutr 2007; 160-6 –Anna Gibert et al.: European Journal of Gastroenterology and Hepatology 2006, 18:1187-1195

23. www.cdmedics.eu

24. Coeliac Patient DiagnosisDietFamily Science Food industry Healthcare/ social supports

25. Food industry Suitable for coeliacs: -Naturally gluten-free unprocessed foods -Foods for special dietary purposes -Normal/traditional foods – free from any kind and form of gluten containing cereals -Innovative/novel/functional foods -Regular testing of GF products -Contamination-free GF food are essential

26. Normal GF Prices Normal vs. GF products

27. Coeliac Patient DiagnosisDiet Science Food industry Healthcare/ social supports Family

28. Family No information before diagnosis in family Changed nutrition and lifestyle Changed quality of life +/- Lifelong condition  lifelong learning 10-times higher risk: first degree relatives Help from patients’ support groups/clubs/ coeliac societies Consultation with psychologist and dietetitian

29. Coeliac Patient DiagnosisDiet Healthcare/ social supports Science Food industry Family

30. Patients’ associations -Encouraged civil society movements -Increase awareness of coeliac disease among healthcare professionals and the general population -Providing patients with relevant information -Protecting the rights of coeliac consumers -Projects: -‘ Eating out GF’ -Traditional-natural-glutenfree -ICD

31. Patients’ associations Difficult to –establish a society (legal procedure) –find enthusiastic, engaged and educated people for run a society (volunteers) –find members –comply with national and international legal requirements and rules –find funding (fundraising) –be transparent, authentic and reliable

32. Europe Mediterranean area Algeria France Spain Turkey Slovenia Italy Croatia Montenegro Albania Greece Malta Israel Cyprus Egypt Tunesia Lybia Maroc Syria Lebanon Russia Ukraine Croatia Serbia

33. Difficulties in MEDICEL countries Difficult to collect correct information about the GF diet (low Internet penetration, language problem) The choice and availability of GF dietetic foods are limited as well the uncontaminated naturally GF food The globalisation changes the eating habits and the traditions The healthcare systems are not everywhere ready for diagnosing, testing and treating more coeliacs The world financial-economic crises has a significantly negative impact of the development of the Mediterranean area

34. MEDICEL-AOECS co-opreation Where coeliac society does not exist yet, AOECS can advise people who wants/are ready to built-up and run a patients’ organisation Solving the language problem: AOECS member associations can offer continuous consultation (sending scientific/information materials, answering patients’ questions, sending food information/lists, etc.) AOECS can invite new and outside Europe associations for workshops, conferences and meetings, can help to organise scientific conferences, trainings for medical professionals International Coeliac Day – join to the yearly event for raising awareness of CD

35. International Coeliac Day 20 May 2006

36. International Coeliac Day 2007

37. 2008

38. 2009

39. Symbol Trade mark and not free ®

40. European Licencing System - European Charta -AOECS Standard Safe, controlled = reliable food products for coeliacs everywhere in Europe (and Worldwide)

42. Take home message AOECS – MEDICEL co-operation Ideal platform to networking and assist the formation and strengthening of coeliac societies/patient’s support groups Help in the formulation of awareness campaigns as well as in the dissemination of information in the local language Co-operation in the organisation of workshops, conferences and meetings incl. scientific conferences and training sessions directed towards tacking the problems of CD in these countries

43. Report April 5th 2011 CELIAC SOCIETIES IN THE MEDITERRANEAN NETWORK MEDICEL Country N.MembersOrganizationNotes Albania no society Algeria no society Sloveniaone2000 national 8 regional member of AOECS Bosniamore3001/canton =10member of AOECS Croatiaone1000national 3 regionalmember of AOECS? Egypt no society Franceone6500 nationalmember of AOECS Greeceone1300national2 members of AOECS Istraelone10.000 national Italyone100.000 national + 20 regional member of AOECS Lebanon no society Lybia no society Maltaone4501 nationalmember of AOECS Morocco no society Siria no society Spainmore 25 regional 2 members of AOECS (F.A.C.E. and SMAP) Tunisia no society Turkeyone was member of AOECS

44. www.aoecs.org info@aoecs.orgtheboard@aoecs.orgallmembers@aoecs.orgcye.board@gmail.com Contacts

45. COMMONCHALLANGE

46. COMMONCHALLANGE