According to the RARECARE project, around 4.3 million people in the European Union (EU) are affected by rare cancers and there are more than 500,000 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, including rare adult solid tumours (13%) and rare haematological cancers (8%) as well as all childhood cancers (1%).
Rare cancers are therefore common occurrences which generate a number of specific challenges due to their very nature as rare cancers. Rare cancer patients may be discriminated against simply because of the numbers of the disease they suffer from. Paediatric cancers as well have been specifically concerned by a number of challenges linked to rare diseases as they often require specific approaches, in line with their distinct age-related biological, clinical and organizational characteristics. Even the very definition of rare cancers has been the product of a necessary consensus amongst the oncology community.
Specific challenges posed by rare cancers:
- Late or incorrect diagnosis
- Lack of access to appropriate therapies and expertise
- Lack of commercial feasibility in developing new therapies
- Difficulties in conducting well-powered clinical studies
- Few tissue banks
- 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