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The Joint Action on Rare Cancers presents the Rare Cancer Agenda 2030 at the European Parliament

The Joint Action on Rare Cancers presents the Rare Cancer Agenda 2030 at the European Parliament

The Joint Action on Rare Cancers presents the Rare Cancer Agenda 2030 at the European Parliament

An event hosted at the European Parliament has celebrated the successful completion of the EU Joint Action on Rare Cancers after three years of activity

The Joint Action on Rare Cancers (JARC) is aimed to integrate and maximize efforts of the European Union (EU) Commission, EU Member States and all stakeholders to advance quality of care and research on rare cancers. Since its launch in 2016, the JARC has worked towards achieving six overarching goals, all aiming to improve rare cancer care, research and clinical outcomes across Europe:

  1. Improving epidemiological surveillance of rare cancers in the EU;
  2. Identifying standards of care for all families of rare cancers to ensure sharing of best practices and equality of care for rare cancers across Europe, particularly through clinical networking;
  3. Improving the implementation at local level and within the ERNs of clinical practice guidelines on rare cancers;
  4. Promoting integration of translational research innovations into rare cancer care;
  5. Improving education on rare cancers for medical and non-medical experts to ameliorate management of rare cancer patients' empowerment in the EU;
  6. Identifying core strategies to incorporate in national cancer plans to address the specific needs of rare cancers across EU Member States

The formal activation of the European Reference Networks (ERNs) is a cornerstone in the EU cooperation on rare cancers. In this sense, JARC has work closely with the ERNs devoted to rare cancers: EuroBloodNet (adult hematological), ERN-EURACAN (adult solid) and ERN-PAEDCAN (paediatric), namely trying to optimize the process of their development in the areas of quality of care, epidemiology, research and innovation, education and state-of-the-art definition on prevention, diagnosis and treatment of rare cancers.

After three years of work with 34 Associated Partners and 18 Member States, JARC has ended with a final meeting held 11th September 2019 at the European Parliament, where the final JARC recommendations (Rare Cancer Agenda 2030) was presented and an assessment of the state of the art and future with ERNs was analysed. EuroBloodNet was represented by Mariangela Pellegrini who participated in the roundtable "What we would need for ERNs on rare cancers to fly".

"Over the past three years, the JARC has worked relentlessly to integrate and maximise the efforts of European stakeholders to advance the quality of care and research on rare cancers," said Dr Paolo G. Casali, JARC coordinator and co-founder of Rare Cancers Europe (RCE), a multi-stakeholder initiative dedicated to putting rare cancers firmly on the European policy agenda, an active collaborating partner of the JARC. 

Particular emphasis was put on the future of the ERNs addressing rare cancers and on the most efficient strategies to implement the JARC recommendations, among those the need for concrete policy actions to address the lack of systematic inclusion of rare cancers in national cancer plans.