The attached document provides a definition of rare cancers and explains the criteria used for defining the cancer entities shown in the list.

Rationale and Questions for Consensus - download PDF 

List of Rare Cancers

This is the list of tumour entities from which rare tumours are identified as those with incidence less than 6 per 100,000 persons / year. The list presents the number of cases reported by European cancer registries during the period 2000-2007 and the corresponding incidence rates. The list is derived from the data of 94 population-based cancer registries from 24 European countries adhering to the RARECAREnet project.

This list includes information on all cancers defined by the RARECARE and RARECAREnet project.

Please note that rare cancers are only those with an incidence of <6/100.000

Download RARECAREnet List Excel spreadsheet  Updated October 2015

Experts for the Definition of Rare Cancers / Rare Cancers List - download PDF 

Rare Cancers List Endorsers

  1. Childhood Cancer Research Group,
  2. CML Advocates Network,
  3. EUROPA DONNA - The European Breast Cancer Coalition:
  4. European Association for Cancer Research (EACR),
  5. European Association of Neuro-Oncology (EANO),
  6. European Association of Nuclear Medicine (EANM),
  7. European Cancer Patient Coalition (ECPC),
  8. European Group for Blood and Marrow Transplantation:
  9. European Oncology Nursing Society,
  10. European Prostate Cancer Coalition, Europa Uomo,
  11. European Society of Gynaecological Oncology (ESGO),
  12. European Society for Medical Oncology (ESMO),
  13. European Society for Paediatric Oncology (SIOP),
  14. European Society of Surgical Oncology (ESSO),
  15. European Society for Therapeutic Radiology and Oncology (ESTRO), 
  16. International Brain Tumour Alliance (IBTA),
  17. International Union Against Cancer (UICC), 
  18. MYELOMA EURONET A.i.s.b.l(ME) Leukaemiehilfe RHEIN-MAIN e.V. (LHRM),