INTERNATIONAL SYMPOSIUM ON IBD RESEARCH Brussels 18 October 2012 Hotel Métropole

1. INTERNATIONAL SYMPOSIUM ON IBD RESEARCH Brussels 18 October 2012 Hotel Métropole Brian Poole Chairman Crohn’s & Colitis New Zealand Charitable Trust EVENT ORGANIZED BY EFCCA

2. New Zealand – Some Facts… New Zealand has: A population of 4 Million 15,000 IBD patients The highest incidence of IBD in the World A national health system providing free and equal access to medical services and pharmaceuticals INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

3. Crohn’s & Colitis New Zealand - CCNZ • Crohn’s & Colitis New Zealand (CCNZ) was established in 2010 www.crohnsandcolitis.org.nz • We have 10 Trustees, comprising: • Patients • Care givers • Clinicians • IBD nurses • 14 Support Groups nationwide • 3 existing prior to establishment • 11 established in the past 2 years • Chief Executive appointed in 2011 • Launched www.toiletmap.co.nz INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

4. Completed Projects • Face-to-Face Psychological Therapy VS. Computerised Cognitive Behavioural Therapy (CCBT) • - Andrew McCombie, IBD Researcher, Chairman Canterbury CCSG • Findings:- • CCBT more accessible • IBD patients more willing to participate via CCBT, particularly younger patients • Effect of IBD on Childrens’ Lifestyle • - Dr John Wyeth, Gastroenterologist, Trustee CCNZ • Findings:- • Negative impact on child and family • Frequent tests and treatments • Need for Psychosocial support • Need for interaction with other IBD children INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

5. Current Projects • EFCCA Impact Study • CCNZ • Nutrigenomics – www.nutrigenomics.org.nz • Auckland University, NZ • Neuroticism as a Predictor of Disease Specific Quality of Life in Newly Diagnosed IBD Patients • Andrew McCombie, IBD Researcher, Chairman Canterbury CCSG • Vitamin D – Does it have a role in IBD? • Institute of Food Nutrition and Human Health, Massey University, NZ INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

6. Current Projects (continued) • Crohn’s Disease and disease of the mouth • Assoc. Professor Anita Nolan, Otago Dental School • The prevalence of oral lesions in CD and establishing if these lesions are part of the initial presentation of CD • Which Crohn’s susceptibility genes may be associated with oral CD • Markers to predict which first-degree relatives may develop CD • Environmental factors that may trigger the onset of CD • Dental habits INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

7. Collaborations Gut Health Network – www.guthealthnetwork.com INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

8. Collaborations (cont’d) IBD Research Review – www.researchreview.co.nz INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

9. Our Hope… “We are a small country with finite resources with patients and researchers widely dispersed. Unless we manage our efforts in a constructive and collaborative way we will not get the critical mass to achieve the momentum required to be effective. We hope today is the beginning of a global journey whereby we all work together to deal with this insidious and cruel disease so that our children and our children’s children will be spared the pain of IBD.” Thank you! INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP