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 aim of the ERN-RECONNET’s annual work plan for 2017 is to establish a community to enhance transnational cooperation between different groups (healthcare providers, patients, caregivers and families, stakeholders, etc.) to develop a comprehensive and harmonized approach to rare and complex autoimmune and hereditary connective and musculoskeletal diseases (rCTDs). For this purpose, activities planned for year 1 are focused on the establishment of a solid, transparent and multi-disciplinary network (also resting on existing international clinical networks, scientific societies and/or international projects), and on the development of proper networking activities as well as of a plan to ensure the integration of the ERN in the overall environment of actors involved in the management of rCTDs (from clinicians to healthcare systems, authorities, industries, insurers, researchers, etc). The main target groups of the ERN are patients, their families and caregivers. They will be actively involved participating to the meetings for the identification of unmet needs related to care and education and in the co-design activity for implementing and customising the contents of the central ERN IT platform with the specific needs of the ERN-RECONNET, that will improve their proactive participation to the management of the disease.Member HCPs are also a major target group. HCPs will work together and join their expertise in the ERN-RECONNET. They will revise current pathways recognising what matters in care and the relevance of patients reported outcomes in the disease management. Members and non-members health professionals, stakeholders as healthcare providers, healthcare systems, HTA bodies and reimbursement authorities, health insurers, industry and scientific Community, will be the target of dissemination activities in order to set the basis for a collaborative framework for action in the field of rCTDs.
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