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, the researchers and the healthcare professionals who research and treat them. In addition to the disparities in the standards of treatment between EU Member States, patients with rare cancers must also overcome a number of challenges such as late or incorrect diagnosis, a lack of access to appropriate therapies and expertise, lack of commercial interest in developing new therapies, difficulties in conducting well powered clinical studies, few available registries and tissue banks.
Despite the principle of subsidiarity, the EU has a long legacy of improving the conditions of cancer patients and its flagship initiatives in the field of cancer such as Horizon Europe’s Mission on Cancer and the Beating Cancer Plan are clear illustrations of the positive strides the EU can take.
In line with the increasing consideration for health-related topics by European policymakers, rare cancers also began to gain the attention of EU Member States. To this day, the Directive on patients’ rights in crosse-border healthcare and the subsequent creation of ERNs dedicated to rare cancers (ERN EURACAN, EuroBloodNet, ERN PaedCan and GENTURIUM) remain one of the EU’s most notable achievements in the field.