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The project Surveillance of Rare Cancers in Europe (RARECARE) estimated that around 4 million people in the European Union (EU) are affected by rare cancers. Despite the rarity of each of the 186 identified rare cancers, they represent all together about 22% of all cancer cases diagnosed in the EU27 each year (Gatta et al.).

Rare Cancers Europe (RCE) has launched the Call to Action that urges policy-makers and stakeholders to give priority to rare cancers.

Building on the experience of the previous project RARECARE and, in collaboration with RCE and many other  RARECARENet aims at building an information network to provide comprehensive information on rare cancers to the community at large (oncologists, general practitioners, researchers, health authorities, patients and their families).


  1. To provide updated indicators of rare cancer burden
  2. To collect and disseminate information on the health care pathways for rare cancers
  3. To identify the qualification criteria for centers of expertise (CE) for rare cancers and disseminate information on CE (list)
  4. To produce and disseminate information on diagnosis and management of rare cancers
  5. To develop a clinical database on very rare cancers to provide new knowledge on these diseases and on their clinical management
  6. To develop and disseminate information for patients including a list of patients’ associations dedicated to rare cancers

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