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Improving the organisation of healthcare in rare cancers

Task Force 2 seeks to overcome organisational challenges of healthcare in rare cancers, and it is committed:

  • To support rare cancers ERNs in achieving better care and research across Europe.
  • To raise awareness and acceptance of the rare cancers classification and standards.
  • To develop recommendations for standardization, data sharing, and collection of tissue for using clinical registry data.

In light of the conclusion of the Joint Action on Rare Cancers (JARC), members of Task Force 2 will build upon the JARC’s deliverables which are relevant to the goals it has set itself in order to keep pursuing the RCE mission. They will be looking to implement the following recommendations of the Rare Cancer Agenda 2030:

  • Recommendation 1: Rare cancers are the rare diseases of oncology, needing specific approaches by the cancer community and national health systems.
  • Recommendation 3: Health systems should exploit networking around multidisciplinary centres of reference, to improve quality of care in rare cancers by rationalising patient access to available best expertise and limiting health migration.
  • Recommendation 9: Policy strategies on rare cancers and sustainability of interventions should be based on networking exploiting national cancer plans, listening to networks and disease-based communities, integrating the EU and the national levels, funding networking.
  • Recommendation 10: Rare cancer patients should be engaged in all crucial areas, such as disease awareness and education, healthcare organization, state-of-the-art instruments, regulatory mechanisms, clinical and translational research.

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