Rare cancers are defined as having an incidence less than 6 new cases per 100,000 population per year.
The estimated annual incidence rate of all rare cancers in Europe is about 108 per 100,000, corresponding to either 541,000 new diagnoses annually or 22% of all cancer diagnoses. Five-year relative survival was on average worse for rare cancers (47%) than common cancers (65%). About 4,300,000 patients are living today in the European Union with a diagnosis of a rare cancer, 24% of the total cancer prevalence.
These estimates show that “rare cancers are not so rare” and deserve the implementation of effective strategies to improve both value-based outcomes such as survival, and market investment. The potential for significant market expansion in cancer personalised care is substantial, estimated to be at least €5 billion in the next five years.
Focusing research and efforts in treating common cancers been successful, yet for rare cancer patients these benefits have been piecemeal.
The challenges to the Rare Cancer project is to address the following:
- Lack of access to the correct diagnosis
- Lack of scientific knowledge and understanding of the underlying biology
- Lack of robustly developed and proven treatments
- Lack of appropriate quality health care
- Inequities in diagnosis, treatment and care among treating centres
- High cost of the few existing drugs and overall care pathway
- Poor communication of knowledge with patients, families and payers