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EFA_FY2014_FY2013 [EFA_FY2014] [20133208] - Operating Grant
Mission and vision of the operating grant holder

Mission
EFA is aiming to be a powerful European network of allergy, asthma and COPD patients’ organisations that:
1. Advocates at the EU level for the needs of patients of these disease areas,
2. Values all members equally,
3. Implements best practices
4. Creates patient-driven projects
5. Cooperates with healthcare professionals, scientists and other stakeholders and NGOs in order to achieve its goals, implement values and have holistic approaches to solving health & care problems which directly affect patients with allergy, asthma and COPD.
Vision
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 environment,
- live uncompromised lives and
- are actively involved in all decisions influencing their health.
The organisation’s activities either integrate all elements of EFA’s vision or specifically focus upon one element individually so as to strengthen the overall position of allergy, asthma and COPD patients in Europe as EFA seeks long-term and meaningful solutions to the everyday issues of the patients it represents.
The core values of the EFA organisation are (1) patient perspective; (2) involvement; (3) sharing knowledge and experience; (4) partnership and cooperation; and (5) visibility and presence. The values are guiding principles for the organisation in all it`s activities. All of EFA’s activities and planning purposefully integrate these central values to demonstrate consistency in EFA’s work plans. As values shared by all its members, they foster trust between the national organisations and EFA, which designates the work performed in Brussels as overlapping with their own interests. These values also demonstrate EFA’s legitimacy to other organisations and actors working at the European level, which signals EFA’s mission and vision are exclusively driven by its membership and the patients whom they represent.
The mission and vision are visibly communicated at EFA website, and EFA publications.

Strategic objectives and specific activities

EFA has specific objectives for each of its five main target groups:
1. For member organisations: Actively communicates with member organisations identifying their needs and develops projects to meet these needs
2. For patients: Provides transparent access to information and educational tools in patient-friendly language and provides opportunities to participate actively in projects
3. For healthcare professionals/scientists: Facilitates communication in patient-friendly language focusing on patient needs, develops and promotes long term partnership on equal level and insures active participation of patients in all decisions regarding their disease
4. For policy-makers: Acts as liaison between people with allergy, asthma and COPD and EU policy-makers, negotiates to raise standards of care, environment and research and communicates and updates about patient needs
5. For NGOs and industry: Develops and promotes long term partnerships and ensures well defined conditions of them.
These objectives are achievable through the following activities, guided by EFA Statutes:
1. Advocacy: EFA influences EU policy making and helps people with allergy, asthma and COPD to understand, be informed about and take part in it through news items, briefings, position papers, responses to consultations, joint advocacy material templates, participation in EU committees (such as EMA Patient and Consumer Working Party and DG SANCO Expert Group on Indoor Air Quality) and by providing patient experts (like with EMA scientific committee meetings and the review of documents). EFA also regularly organizes high level events at the EP (such as EFA food allergen labeling event regarding the EU regulation on information to consumers) providing opportunity for stakeholders to come together with a patient-centered agenda on a topical issue. The EFA Annual General Meeting and Network Meeting are the main events through which policy and actions are coordinated.
2. Capacity building: In order to support the creation of a European network of strong and professional national organisations of people with allergy, asthma and COPD, EFA annually organizes for its members the “Meet and Greet EU Institutions’ training event. The overall objective of the training is to give to the members an overview of the EU functioning and policies directly or indirectly related to their disease areas and a better understanding of how national policies are affected by the EU and how they can contribute to the EU policy making through EFA. Future activities will include capacity building for members on patient involvement at EMA, to support EFA’s involvement at the EMA with further patient experts .
3. Sharing best practices: EFA empowers member organisations to realize a comparable level in serving the interest of patients by exchanging experiences. EFA’s disease specific Working Groups (allergy, food allergy, asthma and COPD) provide opportunities for members to share best practices, discuss, follow up and plan projects of high interest to patients (severe disease, prevention and innovation). EFA’s own evidence and the evidence generated in partnering EU research projects are a tool to set the scene and provide an evidence base from patient perspective (such as EFA Book on Respiratory Allergy in Europe and EFA Book on COPD in Europe). This is achieved in close collaboration with EFA’s multidisciplinary partnerships and is followed with action and communication. The purpose is to forge the link with the European level by supporting national actions. An action like the pilot training on the Finnish Allergy Programme, based on the needs and gaps identified in the EFA Book on Respiratory Allergies precisely exemplifies this point.
All in all, EFA’s objectives and general activities have strong synergy with the objectives of the EU Health Strategy and contribute to the realization of actions on chronic conditions, prevention and health promotion.

Expected outcomes

Developing operations / Governance, through
- Setting up multiannual planning process through strategic planning workshop at the AGM & Network meeting & following members strategic planning working group
- Building internal capacity, through extending the office with dedicated expertise on financial management & communications
- Evaluation of core-programme, through implementation of evaluation framework with external evaluator
Target groups: EFA internal
Outcomes: Draft Strategic Plan 2015-2020, Evaluation report, high quality management & reporting, visible, effective dissemination
Creating patient driven projects & sharing best practices through
- Training: Meet & Greet EU institutions & EMA training for members to extend EFA patient expertise at the EMA -> increased capacity to be involved in EU policy
- Working groups for members (allergy, asthma, COPD, food allergy)
- Capacity building project programme supporting effective, representative and independent allergy and CRD patient groups, focus on countries with the lowest GBP
- EFA multiannual projects on respiratory allergy, COPD, Oxygen, Adolescents with asthma and Pollen information services to take action and build patient evidence for policy
Target groups: members, patients
Outcomes: increased capacity at the national level for EU policy involvement, feedback & involvement of members, more and better quality patient representation at national level, patient evidence for policy
Advocating at EU level for the needs of people with allergy, asthma & COPD on
- Care:
- medicines, safety, pharmacovigilance, medical devices: continue delivering & developing strong input through involvement at the EMA & EU legislative dossiers implementation
- involvement in the implementation EU Food labeling regulation & organising an event at the EP to present MS plans for allergen labeling & involvement of patient groups
- Health determinants/Environment:
- Indoor and outdoor air quality through EU Expert group on indoor air & involvement in EU legislation on air quality (NEC, ambient air)
- Chemicals through involvement in the implementation of the REACH
- Tobacco through involvement in the EU tobacco products directive implementation/decision making
- Research through involvement in priority setting for Horizon 2020
- Extending the representativeness in EU policy, through implementing EFA membership strategy, with focus on EU countries with lower quartile GDP: Baltic and U.K. alignment meetings, Visit to Hungary to gauge more members
Target groups: policy makers, patients
Outcomes: consistent involvement and input from people with allergy, asthma and COPD into relevant EU policies (position papers, briefings), expanding network: 4 membership applications
Co-operating with health care professionals, scientists & other stakeholders/NGOs, through
- 3 FP7 project partnerships on better care and innovation of great interest to patients through representing patients in U-BIOPRED (understanding severe asthma), MEDALL (mechanisms of the development of allergy) and AIRPROM (airway specific computational modeling).
- Translation and communication of the above project results in connection of the EFA AGM to patients & other non-research stakeholder through an event at the EP as part of core-programme
- Wide multidisciplinary partnerships in policy and EFA- and partnership projects
- Aligning with other patient groups representing patients with respiratory diseases through 1st EFA coordination meeting
Target groups: HCPs, scientists & other stakeholders
Outcomes: patient input and representation in relevant research projects, high end EU research project results available in lay language to patients/public/policy makers, strong multidisciplinary partnerships & alignment, alignment of respiratory patient groups

Details
Start date: 01/01/2014
End date: 01/01/2015
Duration: 12 month(s)
Current status: Finalised
Programme title: Second Programme of Community action in the Field of Health 2008-2013
EC Contribution: € 240 160,00
Portfolio: Population groups