The European Organisation for Rare Diseases – EURORDIS – represents the voice of an estimated 30 million people living with a rare disease in the EU, and their families. The proposal submitted for Operating Grant FPA 2015-2017 is structured around four main objectives of utmost importance for the European rare disease patients’ community:1. To consolidate the Rare Disease patients’ community and strengthen the RDs patients’ voice;2. To actively engage rare disease patients’ representatives into the effective implementation and monitoring of relevant EU legislation / strategies and support their integration at national level;3. To build capacities and empower rare disease patients advocates, members and volunteers;4. To sustain human, financial and organisational resources. EURORDIS achieves these objectives through the following activities: collecting data as well as gathering, disseminating and sharing information; support capacity-building to empower patients’ advocates; providing patients, families, carers, decision-makers and other stakeholders with relevant expertise to inform policy-making; generating EU added-value and support Member States efforts; promoting translational research towards therapeutic intervention for patients; serving as a relay of two-ways information flow between policy makers and rare disease patient groups; promoting access to high quality and safe healthcare services for rare disease patients throughout the EU. Through these activities, EURORDIS will contribute to the implementation of the priorities of the Third Public Health Programme which are to complement, add value and support national policies and strategies implemented by Member States to improve health, reduce health inequalities, support health capacity-building, generate and disseminate health information, contribute to innovative, efficient and sustainable health systems, support cross border healthcare in order to facilitate access to better and safer healthcare.
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The proposal concerns the EPF 2017 work programme arising from the three-year framework agreement between EPF and Chafea in the framework of the EU Public Health Programme 2014-2020. EPF’s Work Programme (WP) 2017 is the third annual programme implementing the three-year Framework Partnership Agreement signed in 2014 with Chafea. As such, the 2017 WP builds on and takes forward the outcomes of our WP 2015 and WP 2016. The 2017 WP will contribute specifically to addressing the six strategic goals expressed in our Strategic Plan 2014-2020. (www.eu-patient.eu/whatwedo/ ).
Our 2017 WP addresses the continuum of care with focus on patient-centred chronic disease management, patient empowerment, and equitable access to high quality health and social care. The WP contributes significantly to the objectives of the Third Health Programme, in particular Obj. 3 “supporting public health capacity building and contributing to innovative, efficient and sustainable health systems” and Obj. 4 “facilitating access to better and safer healthcare”.
EPF 2017 WP revolves around four operational objectives:
OBJECTIVE 1 - To promote the development and implementation of policies, strategies and services that foster the empowerment of patients and patient organisations.
OBJECTIVE 2 - To promote the development and implementation of policies, strategies and healthcare services that maximise access and reduce health inequalities across the EU.
OBJECTIVE 3 – To reinforce the capacity of patients and patient organisations to contribute effectively to better health and social care for all patients in the EU, while enhancing their accountability and mutual solidarity.
OBJECTIVE 4 – To actively engage with the wider health stakeholder community and policy makers to advance the patient-centred agenda at both national and European level.


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The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues to achieve a cancer-free Europe. In coherence with the FPA 2018-2021, this SGA focuses on the core activities to be implemented in 2018 in respect of the following strategic objectives:
1) Informing policy to ensure cancer control remains high on the political agenda;
2) Promoting the European Code Against Cancer (ECAC) as the essential tool for cancer prevention;
3) Supporting leagues in the implementation of the Council Recommendation on Cancer Screening;
4) Uniting leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
5) Advocating for the European Guide for quality improvement in cancer control to be mainstreamed in national cancer plans.
In concrete terms, these objectives will be achieved by: the organisation of a policy dialogue during the European Week against Cancer (EWAC), and development of toolkit to facilitate the roll-out of this format across the EU during EWAC; increasing ECL actions on organised cancer screening by publishing a lay version of the recent EU cancer screening report, and developing training for cancer leagues in this area; promotion of the ECAC by networking cancer leagues, and enhancing the role of the ECL Youth Ambassadors in these efforts; publication of guidelines by the Patient Support Working Group and Access to Medicines Task Force of ECL; and ongoing secretariat function of the successful MEPs against Cancer group of the European Parliament. In addition, ECL will host two trainees from the EU Solidarity Corps, and develop a process to encourage the wider participation of cancer leagues in this initiative.
This proposal has relevance to the annual work programme through its focus on health determinants and health promotion, boosting cancer control, and equitable access to healthcare.
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The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues to achieve a cancer-free Europe. In coherence with the FPA 2018-2021, this SGA focuses on the core activities to be implemented in 2019 in respect of the following strategic objectives:

1) Informing policy to ensure cancer control remains high on the political agenda;
2) Promoting the European Code Against Cancer (ECAC) as the essential tool for cancer prevention;
3) Supporting leagues in the implementation of the Council Recommendation on Cancer Screening;
4) Uniting leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
5) Advocating for the European Guide for quality improvement in cancer control to be mainstreamed in national
cancer plans.

These objectives will be achieved by several actions, including:
- performing a survey of national contact points to update the triennial tobacco control scale;
- securing the re-establishment of the MEPs against Cancer (MAC) group in the next mandate of the European Parliament;
- publishing a policy framework of supportive actions to implement the European Code against Cancer;
- developing a web portal on cancer screening to be hosted on the ECL website (www.cancer.eu);
- drafting and disseminating new guidelines on healthcare professionals communication with patients, and effective use of volunteers by cancer leagues;
- collecting best practice on the implementation of the CanCon guide at the national level.

This proposal has relevance to the annual work programme through its focus on health determinants and health promotion, boosting cancer control, and equitable access to healthcare.
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The Association of European Cancer Leagues (ECL) provides a unique platform as the only organisation with the mission of uniting at the European level, national and regional cancer leagues to achieve a cancer-free Europe. In coherence with the FPA 2018-2021, this SGA focuses on the core activities to be implemented in 2020 in respect of the following strategic objectives:

1) Informing policy to ensure cancer control remains high on the political agenda;
2) Promoting the European Code Against Cancer (ECAC) as the essential tool for cancer prevention;
3) Supporting leagues in the implementation of the Council Recommendation on Cancer Screening;
4) Uniting leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
5) Advocating for the European Guide for quality improvement in cancer control to be mainstreamed in national cancer plans.

These objectives will be achieved by several actions, including:

- Organisation of the 8th European Conference on Tobacco or Health and publication of the latest Tobacco Control Scale report including data from 38 countries in the European region;
- Implementing the MEPs against Cancer (MAC) European elections manifesto through coordinated actions of the group, supporting four structured meetings of the group;
- Publishing the final report of the systematic evaluation of impact of the European Code against Cancer and informing policymakers and the scientific community of results;
- Enhancing the ECL Youth Ambassadors programme to reach at least 40 European Countries and all EU member states in 2020;
- Supporting the roadmap towards a 3rd implementation report on cancer screening in the EU;
- Publication by the Patient Support Working Group of new guidance and training at the national level to address cancer in the workplace;
- Continuation of the advocacy work of the ECL Access to Medicines Task Force implementing the 2018 'Let's Talk Access' White Paper on Equal Access to Medicines.
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