This Joint Action on Rare Cancers (JARC) will be aimed at:

1. prioritising rare cancers (RCs) in the agenda of the Europe (EU) and Member States;
2. developing innovative and shared solutions for European Reference Networks (ERNs) on RCs, in the areas of quality of care, innovation, education and state of the art definition on prevention, diagnosis and treatment.
The objectives of JARC will be achieved by creating a platform for competent national authorities as well as institutions, scientific and professional societies and patient organisations, to produce consensus-based recommendations, with a special view to the new ERNs, seen as a great opportunity for improvement of RC patient outcomes in the EU.
Following the results of the RARECARE project, all the 12 families of RCs will be considered. Consensus-based recommendations about RCs will be provided to improve: 1) epidemiological surveillance of RCs; 2) quality of healthcare, primarily through the new ERNs; 3) the availability of clinical practice guidelines on RCs; 4) innovation, also by optimizing clinical research regulations as well as practices and semantics regarding patient data and tissues; 5) medical and patient education; 6) health policy measures on RCs at the EU and national level; 7) patient empowerment (which will be pursued across all items dealt with by JARC). All EU stakeholders in the field of RCs and rare diseases will be involved.
JARC will carry forward the aims of the Third Health Programme by improving chances of EU RC patients to have access to appropriate healthcare, primarily through optimal shaping of ERNs. Thus, all this should result in reduced healthcare inequalities, increased innovation in health, increased sustainability of health systems, decreased health migration and reduction of gaps in rare cancers survival across EU countries.

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The Association of European Cancer Leagues (ECL) provides a unique platform in Europe as the only organisation with the mission of uniting, at the European level, national and regional cancer leagues to achieve a cancer-free Europe. Active since 1980, ECL currently has 26 members from 23 countries in the European Region, covering 19 EU member states.
The objectives of this proposal are to:
- inform policy to ensure cancer control remains high on the political agenda;
- promote the European Code Against Cancer (ECAC) as the essential tool for cancer prevention in Europe;
- support leagues in the implementation of the Council Recommendation on Cancer Screening;
- unite leagues to advocate for equal access to treatment, support, and rehabilitation for cancer patients;
- advocate for the European Guide for quality improvement in comprehensive cancer control to be mainstreamed in national cancer control plans.
These objectives will be achieved through ECL's role as the secretariat of the MEPs against Cancer group; continuing our extensive work in tobacco control, including organising the triannual European Conference on Tobacco or Health (ECToH); developing training workshops and study exchanges for leagues; networking leagues in the ECL Patient Support Working Group, and Task Force on Access to Medicines; facilitating multi-stakeholder policy dialogues at national and European levels; and supporting targeted dissemination of ECAC to young people, including making use of the EU Solidarity Corps.
The activities of this proposal are particularity relevant to the work programme of the Third EU Health Programme as they directly address the core priorities of cancer, health promotion and prevention of chronic diseases, access to healthcare, and patient empowerment. These actions deliver high EU added-value by disseminating key outcomes from the EU level at the national level, and enabling the efficient input from cancer leagues to the EU policy dialogue.
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