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What are rare cancers?

Around 5.1 million people in the European Union (EU) + the United Kingdom are affected by rare cancers and there are more than 650,000 new cases diagnosed every year. [1]

Individually, each of the 198 identified rare cancers is considered "rare", but collectively they represent about 24% of all cancer cases diagnosed in the EU27 + the United Kingdom each year[2], including rare adult solid tumours (13%) and rare haematological cancers (8%) as well as all childhood cancers (1%).[3]

You will find additional information on rare cancers below which can help you gain a deeper understanding of these challenging conditions and how they are currently being defined and structured by leading experts.

Want to find out more about the challenges Rare Cancer patients face, please consult the RCE Factsheet on Rare Cancer.

  1. Secretariat of the Special Committee on Beating Cancer. Background Note on Paediatric and Rare Cancers. European Parliament, 15 Feb. 2021.
  2. Gatta G, van der Zwan JM, Casali PG, Siesling S, Dei Tos AP, Kunkler I, Otter R, Licitra L, Mallone S, Tavilla A, Trama A, Capocaccia R; RARECARE working group. Rare cancers are not so rare: the rare cancer burden in Europe. Eur J Cancer. 2011 Nov;47(17):2493-511. doi: 10.1016/j.ejca.2011.08.008. Epub 2011 Oct 25. PMID: 22033323. 
    DOI: 10.1016/j.ejca.2011.08.008
  3. Gatta G, Capocaccia R, Botta L, Mallone S, De Angelis R, Ardanaz E, Comber H, Dimitrova N, Leinonen MK, Siesling S, Van der Zwan JM, Van Eycken L, Visser O, P Žakelj M, Anderson LA, Bella F, Kaire I, Otter R, Stiller CA, Trama A., RARECARE working group Burden and centralised treatment in Europe of rare tumours: results of RARECAREnet—a population-based study. The Lancet Oncology. 2017 Aug. VOLUME 18, ISSUE 8, P1022-1039. DOI:https://doi.org/10.1016/S1470-2045(17)30445-X

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