RARECARENet – Information Network on Rare Cancers

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Cancer List

Rationale

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

Childhood Cancer Research Group,  http://www.ccrg.ox.ac.uk

CML Advocates Network,  http://www.cmladvocates.net

EUROPA DONNA – The European Breast Cancer Coalition: www.europadonna.org

European Association for Cancer Research (EACR),  http://www.eacr.org

European Association of Neuro-Oncology (EANO),  http://www.eano.eu

European Association of Nuclear Medicine (EANM),  http://www.eanm.org

European Cancer Patient Coalition (ECPC),  http://www.ecpc.org

European Group for Blood and Marrow Transplantation: www.ebmt.org

European Oncology Nursing Society,  http://www.cancernurse.eu

European Prostate Cancer Coalition, Europa Uomo,  http://www.europa-uomo.org

European Society of Gynaecological Oncology (ESGO),  http://www.esgo.org

European Society for Medical Oncology (ESMO),  http://www.esmo.org

European Society for Paediatric Oncology (SIOP),  http://www.siope.eu

European Society of Surgical Oncology (ESSO),  http://www.essoweb.org

European Society for Therapeutic Radiology and Oncology (ESTRO),  http://www.estro.org 

International Brain Tumour Alliance (IBTA),  http://www.theibta.org

International Union Against Cancer (UICC),  http://www.uicc.org 

MYELOMA EURONET A.i.s.b.l(ME) Leukaemiehilfe RHEIN-MAIN e.V. (LHRM),  http://www.myeloma-euronet.org