Rare Cancers Europe Milestones 2008-2018

Rare Cancers Europe: 10 years of cooperation to improve care for rare cancer patients

Rare Cancers Europe (RCE) was established in November 2008 as a multi-stakeholder initiative to overcome the unique challenges faced by the rare cancers community. With representatives from all key stakeholders: patient organisations, research institutions, scientific societies, education providers and industry, RCE ensures a holistic approach to rare cancers.

Over the past 10 years, RCE’s efforts to raise awareness and putting rare cancers on the European policy agenda have culminated in the acknowledgement of the specificities of rare cancers and have sparked a much-needed discussion.


  • Drafting of 39 recommendations on stakeholder actions and public policy, which are still the basis for RCE’s activity -- 2008
  • Launch of the Joint Action on Rare Cancers (JARC) - 2016
  • Support the formation of European Reference Networks (ERNs), part of the Cross-Border Healthcare Directive. Importantly, within the ERNs, three focus on rare cancers: EURACAN (rare adult solid cancers); PaedCan (paediatric cancers); EuroBloodNet (haematological diseases and cancers) -- 2016
  • Constant and ongoing dialogue with the European Medicines Agency (EMA) -- since 2013
  • Specific educational offer for healthcare professionals and patient advocates – since 2012
  • Launch of Rare Cancers Asia, November 2018