INTERNATIONAL SYMPOSIUM ON FUNDED BY PATIENTS' ORGANISATIONS IBD RESEARCH FUNDED BY PATIENTS' ORGANISATIONS “ROADMAP” Brussels 18 October 2012 Hotel Métropole EVENT ORGANIZED BY EFCCA

afa, its story INTRODUCTION 1982 … Janine Aupetit with Pr Le Quintrec creates afa after the death of her son François Aupetit, who had Crohn’s disease There was no network of gastroenterologists, no team of research specialized in IBDs, clinicians (and patients ! )were isolated While The Pr Le Quintrec tried to constitute a network, Janine Aupetit looked for money from her friends So at the origins of afa, there was at the same time the research funding and the necessity to encourage collaboration around IBDs Janine Aupetit INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

Creation of the first Scientific Committee in 1982 Research : How ?   Creation of the first Scientific Committee in 1982 Composed of clinicians as well as researchers Realisation of a call for projects launched every year to all french research institutes INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

Projects that lead to stable research teams (sustainability) SELECTION CRITERIA   Help to start projects likely to continue with other funding ( win time ) Projects that lead to stable research teams (sustainability) Projects that promote multidisciplinary collaboration Exploring various lines of research, inflammation, immunology, epidemiology, bacteriology, psychology INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

DESCRIPTION OF RESEARCH Since 1982, afa has supported 180 research grants for nearly 5 million € in the knowledge of IBDs. There are 4 leads of research for which we are proud to have raised money 1/ The first french epidemiological studies (EPIMAD) 2/ Discover and locate on chromosome 16 of a gene of susceptibility of Crohn's disease (1st in the World) – Jean Pierre Hugot- Gilles Thomas 3/Highlight the possible role of intestinal bacteria – Arlette Darfeuille-Michaud 4/Support the investigation CESAME with 20 800 patients- Laurent Beaugerie In 2009 : 467 000 € allocated to research In 2010 : afa doubled its budget by launching a large call for projets for 500 000 € on the pathophysiology of ulcerative colitis. In 2011 : 259 000 € were awarded to 12 grants INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

What is important for us Funding sources are only private : members + private donations (grants in memory of Fabrice Glikson: 500 000 euros for UC) Research is directly linked to patients choices afa does not want to be just a wallet = we want to go further in the involvment. Research funding is not the only source of an association’s involvement in research Ex : The best successes often come from the clinic : patients can participate in the development of leads of research (survey ) The key to success lies in an agreement between clinicians and basic researchers. So, why not with patients ? INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

Strong Examples for us Two research units totally dedicated to IBDs One in Paris INSERM U773 / Labex Inflamex managed by Eric Ogier Denis , the other in Lille INSERM U995 managed by Pierre Desreumaux And specific research about UC In Paris , Tobacco , appendicectomy and UC : What in tobbaco and appendicectomy improves UC ? In Lille, cholangitis and UC : why when cholangitis wakes up, the UC becomes quiet ? Fascinating questions that come from clinical observation…good results are waiting. A very close relationship with clinicians and basic researchers. And the possibility for the patients to visit the units and meet the researchers (organised by afa). A way to make feel the researchers useful and the patients hopeful INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP

Tomorrow Develop a special call for projects about social and human sciences : To help patients to better deal with the impacts of their disease and to restore their role in society, inside the family, at work (Therapeutic Education) To evaluate the impact of a patient’s organisation in the society To evaluate the impact of the invisible disability etc… Questions : How to evaluate and judge the projects ? Do we need experts ? Intensify the link between patients and researchers to go further : surveys to know the real life, visits with patients in research laboratories, create mixed groups to discuss. INTERNATIONAL SYMPOSIUM ON IBD RESEARCH FUNDED BY PATIENTS ORGANISATIONS – ROADMAP