Rare cancers are infrequent cancers, each one affecting a small group of patients. They are defined as cancers with an incidence rate of less than 6 per 100,000 persons per year. However, about 24% of all new cancer diagnoses every year are ‘rare’.
Given their specificities rare cancers pose specific challenges faced not only by patients living with rare cancers, but also clinicians and researchers working in the field, such as:
- Late or incorrect diagnosis
- Lack of access to appropriate therapies and expertise
- Lack of commercial interest in developing new therapies
- Very limited number of clinical studies
- Few available registries and tissue banks
ESMO has been addressing the issue of rare cancers for more than ten years, since the launch of Rare Cancers Europe in 2008 and Rare Cancers Asia in 2018. These multistakeholder partnerships have been developed under the leadership of ESMO and bring together partners from key stakeholder providers.
The rare cancer partners work together to place the issue of rare cancers firmly on the European and Asian policy agendas, to identify and promote appropriate solutions to current challenges, and to exchange best practices to improve patient outcomes.