Rare Cancers in Europe

The European Union (EU) has a long history of improving the conditions of cancer patients.

Its flagship initiatives in the field of cancer, such as Europe's Beating Cancer Plan and the EU Cancer Mission, are clear illustrations of the positive strides the EU can take in improving the lives of cancer patients.

As health becomes a higher priority for the EU, it is crucial that rare cancers are addressed in key policy files, such as the ongoing revision of the EU general pharmaceuticals legislation, which is a key part of the European Commission’s Pharmaceutical Strategy for Europe. The Pharmaceutical Strategy for Europe was published by the European Commission in November 2020, with the stated aim of creating a future-proof regulatory framework for the sector with an overall focus on improving access, affordability and availability of medicines. Rare cancers are also reflected across the institutions of the European Union, with the development of the own-initiative report from the European Parliament’s Special Committee on Beating Cancer (BECA), which also highlighted the need to address the unique challenges of rare cancers in the EU’s future actions.

Going forward, new policy files and those undergoing revision, such as the EU legislation on medicines for children & rare diseases, will need to take into full account the needs of rare cancers. The legislative proposals for the European Health Data Space and AI Regulation are also key to sharing existing data on rare cancers across Europe and ensuring innovative care for all patients. Furthermore, the Directive on patients' rights in cross border healthcare and the subsequent creation of European Reference Networks (ERNs) dedicated to rare cancers remain amongst the EU’s most notable achievements in the field.

However, despite the EU’s many achievements, the very nature of rare cancers adds a layer of complexity to overcoming the challenges they pose to patients, researchers and healthcare professionals. In addition to the disparities in the standards of treatment between EU Member States, patients with rare cancers face a unique set of challenges, linked to a late or incorrect diagnosis, lack of access to appropriate therapies and expertise, lack of understanding of the underlying science, lack of commercial feasibility in developing new therapies, difficulties in conducting well-powered clinical studies, feelings of isolation and a low number of available tissue banks.

This importance of rare cancers is supported by the fact that 24% of all new cancer diagnoses, including all paediatric cancers, across Europe each year are rare forms of the disease. With 650,000 new rare cancer diagnoses annually, and around 5.1 million people in the EU living with a rare cancer, rare cancers are not so rare. Taken together, this means that now, more than ever, the EU must seize the opportunity to fight rare cancers.