EFA’s Involvement in EU Projects

1. EFA’s Involvement in EU Projects Breda Flood EFA President Breda.flood@efanet.org

2. About EFA About EFA • The European Federation of Allergy and Airways Diseases Patients Associations (EFA) was founded in 1991 • EFA is a European network of 35 allergy, asthma and COPD patient organisations in 22 European countries • EFA unites patient associations at the European level and seeks to improve the health and quality of life for patients and their families by facilitating collaboration and sharing knowledge and experiences • EFA has its Central Office in Brussels, Belgium

3. EFA’s Vision & Mission EFA is dedicated to making Europe a place where people with allergies, asthma and COPD: • Have the right to the best quality of care and safe living environments • Live uncompromised lives • Are actively involved in all decisions influencing their health EFA aims to be a powerful European network which: • Advocates at EU level for the needs of people with allergies, asthma and COPD • Values all members equally • Implements best practices • Creates patient-driven projects • Cooperates with healthcare professionals, scientists, other NGOs

4. EFA-Strategy Involving Patients in Meaningful Research Implementation Care Environment New or improvedtools Impact PATIENT Needs & expectations & participation NEW Knowledge Understanding Evaluation & gaps in knowledge RESEARCH RESEARCH needs POLICY EU & national Research FP7, FP8 Environment Care

5. EFA and EU Projects EFA at EU-level • AdvocacyEFA brings the voice of allergy, asthma and COPD patients in Europe to the research process by representing them towards the EU Decision Makers. • CommunicationBy Communicating EU Policy Developments, EFA informs its member associations and provides the opportunity to shareknowledge and best practices and to developEU-wide guidelines. • Project ManagementRepresenting patients in EU funded Research and Health Projects • Network:EFA enables a powerful European network of patients’ organisationswhich it supports by holding an annual General Meeting, frequent Board Meetings, Working Groups, Events and Trainings throughout the year.

6. HealthVent2010 - 2013 Health Based Ventilation Guidelines for EuropeRegarding indoor Air Quality AimDeveloping health-based ventilation guidelines for Europeby bringing together experts and respiratory patients to Improve Indoor Air Quality ToolsPolicy making Best practice recommendations EFA’s Role Involvement in the ImplementationandEvaluationof the Project and the Guidelines by providing a patient representative’s view and coordinating patients’ input. EFA also assists in Translation and Dissemination by providing Patients’ Input and by using its Network and CommunicationTools.

7. U-BIOPRED2009-2015 U-BIOPRED To improve our understanding of severe asthma and create a handprint on how asthma effects patients. This can alter the way medicines are developed. EFA’s Involvement • Assistance: Drafting ExitQuestionnaire and Arranging Translationspreparation of interviewsof different consortium leadersOffering a patients’ perspective on several Ethical Issues • Projectupdate: Coordination inDesign and Assistance in drafting the contents • EFAwas active in Dissemination, the Ethics Board and the Safety Monitoring Board EFA’s Objective To offer the Patient Input Platform assistance in moving the initiative towards becoming a part in all EU Health Projects.

8. MeDALL2010-2019 Mechanisms of the Development of Allergy FP7 project focused on: Improving Health of European citizens byinvestigating the initiating mechanisms of Allergy To propose early diagnosis, prevention opportunities and define Therapytargets to innovate treatment. EFA’s Role • Assistance in Communicating and Disseminatingthe project’s information • Training, Dissemination and exploitation; Preserving patients’ perspective EFA’s Future Role:contributing in the creation of a Generic Templateto create a national allergy program in Europeancountries by inclusion of policymakers and patients

9. AirPROM2011 - 2016 Personalised Treatment for people with respiratory disease – Airway Disease Predicting outcomes through Patient Specific Computationel Modeling FP-7 project: • Aim: Personalized treatment forasthma and COPD patients. • Tools:Information Bank to provide personalized treatment plans through a computer model of the human lungs. EFA’s Role: • Dissemination, Training and ExploitationTogether with ELF and ERS, EFA is co-leading this Work Package. • Dissemination of AIRPROM leaflets (for patient and scientific audiences) • Managementof the Linkedin Group Page • Participationin the dissemination WP and exploitation committee teleconferences • EFA’s President features as Patient Representative (Exploitation Committee) • Aim: Increase involvement by communicating to the general public raising the project’s profile

10. EARIPSubmitted in 2013 European Asthma Research and Innovation Partnership FP-7project: • Aim: Reduce asthma attacks, emergency healthcare utilization and asthma deaths, by means of a coordinated pan-European response. It hopes to result in a Roadmap for Asthma Research in Europe and the creation of Sustainable Innovation Partnership on asthma to support Patient-centered care & Innovation EFA’s Role Leading position in Health and Care System Change: recommendations for effective modelsfor Asthma where individuals are placed at the center of the Management and Treatment of the Disease.By providing literature reviews, workshops (at regional level) to present best practices in Europe and Horizontal stakeholder collaboration (between national health system experts, patient organizations and others).

11. Concluding Remarks Over the years EFA has become involved in several EU-funded Research projects concerning Allergy and Respiratory Diseases With these projects providing opportunities for patient( representative)s to participate in an active way.By collecting and coordinating Patient Input, EFA provides patient involvement in several dimensions of the Research Process: • Dissemination • Translation • Training • Exploitation • Ethics

12. Thank you for your attention! European Federation of Allergy and Airways Diseases Patients' Associations  (EFA) EFA 35 Rue du Congrès 1000 Brussels, Belgium  www.efanet.org