The Joint Action on Rare Cancers marks its end at the European Parliament

  • Date: 11 Sep 2019

BRUSSELS, Belgium – An event hosted today at the European Parliament has celebrated the successful completion of the EU Joint Action on Rare Cancers (JARC), highlighting the achievements obtained through the concerted work of 18 Member States and 34 Associated Partners.

“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.

The meeting at the EU Parliament hosted a debate on the 10 JARC recommendations to set the rare cancer agenda for the next decade – “a commitment towards which we must all work together,” Casali said. Particular emphasis was put on the future of the European Reference Networks (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.

Now that the JARC has come to an end, RCE will support the rare cancers community towards the effective implementation of the Joint Action’s final deliverable, namely the Rare Cancer Agenda 2030. “Rare Cancers Europe looks forward to continuing JARC’s work and prolonging the life of this collaborative effort by spreading awareness of rare cancers across Europe, strengthening healthcare networking as well as clinical and methodological research in the field of rare cancers,” Casali said.

The JARC partners would like to express their gratitude to MEP Fulvio Martusciello for kindly hosting the event and thank also the numerous stakeholders that with their presence witnessed their deep interest in rare cancers and their support to the cause.

Notes to Editors

About the Joint Action on Rare Cancers (JARC)

The JARC is a Member-State driven initiative funded by the European Commission’s Health Programme, of which Rare Cancers Europe (RCE) is a collaborating partner.

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