EFA

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EFAs Involvement in EU Projects

• Breda Flood
• EFA President
• Breda.flood_at_efanet.org

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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

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EFAs 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

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EFA-Strategy Involving Patients in Meaningful
Research
Implementation Care Environment
New or improved tools
Impact
PATIENT Needs expectations participation
NEW Knowledge Understanding
Evaluation gaps in knowledge
RESEARCH
RESEARCH needs
POLICY EU national Research FP7,
FP8 Environment Care
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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 share knowledge
  and best practices and to develop EU-wide
  guidelines.
• Project ManagementRepresenting patients in EU
  funded Research and Health Projects
• NetworkEFA enables a powerful European network
  of patients organisations which it supports by
  holding an annual General Meeting, frequent Board
  Meetings, Working Groups, Events and Trainings
  throughout the year.

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HealthVent2010 - 2013

• Health Based Ventilation Guidelines for
  EuropeRegarding indoor Air Quality
• Aim Developing health-based ventilation
  guidelines for Europe by bringing together
  experts and respiratory patients to Improve
  Indoor Air Quality
• Tools Policy making
• Best practice recommendations
• EFAs Role
• Involvement in the Implementation and Evaluation
  of the Project and the Guidelines by providing a
  patient representatives view and coordinating
  patients input.
• EFA also assists in Translation and Dissemination
  by providing Patients Input and by using its
  Network and Communication Tools.

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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.
• EFAs Involvement
• Assistance Drafting Exit Questionnaire and
  Arranging Translations preparation of
  interviews of different consortium leaders
  Offering a patients perspective on several
  Ethical Issues
• Project update Coordination in Design and
  Assistance in drafting the contents
• EFAwas active in Dissemination, the Ethics Board
  and the Safety Monitoring Board
• EFAs Objective
• To offer the Patient Input Platform assistance in
  moving the initiative towards becoming a part in
  all EU Health Projects.

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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 Therapy targets to
  innovate treatment.
• EFAs Role
• Assistance in Communicating and Disseminatingthe
  projects information
• Training, Dissemination and exploitation
  Preserving patients perspective
• EFAs Future Rolecontributing in the creation
  of a Generic Templateto create a national
  allergy program in Europeancountries by
  inclusion of policymakers and patients

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AirPROM2011 - 2016

• Personalised Treatment for people with
  respiratory disease Airway Disease Predicting
  outcomes through Patient Specific Computationel
  Modeling
• FP-7 project
• Aim Personalized treatment for asthma and
  COPD patients.
• Tools Information Bank to provide personalized
  treatment plans through a computer model of
  the human lungs.
• EFAs 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)
• Management of the Linkedin Group Page
• Participation in the dissemination WP and
  exploitation committee teleconferences
• EFAs President features as Patient
  Representative (Exploitation Committee)
• Aim Increase involvement by communicating to
  the general public raising the projects
  profile

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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
• EFAs Role
• Leading position in Health and Care System
  Change recommendations for effective models for
  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).

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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

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• 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