For World Cancer Day 2015, RCE has promoted its call for ERNs in the January edition of the Parliament Magazine.
Every year, over four million Europeans are diagnosed with a rare cancer - 20 % of all cancer cases diagnosed in Europe are rare so, taken together, they are not so rare.
Rare cancers pose a unique set of challenges including:
- Late or incorrect diagnosis
- Difficulties in finding clinical expertise and accessing appropriate treatments
- Difficulties in carrying out clinical studies due to the small number of patients
- Funding research for innovative therapies due to small markets
- Uncertainty in clinical decision-making
- Scarcity of registries, guidelines and tissue banks
The addional difficulties of rare cancers
Rare cancers bring great distress to patients and their caregivers. Due to the particular difficulties they pose, rare cancer patients face an additional burden of uncertainty. Access to expert opinion is crucial yet may entail travelling long distances, often across national borders.
The burden of rare cancers on society has not yet been adequately estimated but is recognised as a major public health problem. Rare cancers include all childhood cancers, most hematologic malignancies and several types of adult solid cancers. Over 198 rare cancers have been identified (grouped into 10+ “families”).
One way to improve diagnosis, treatment and quality of care for rare cancer patients is to concentrate treatment in specialised centres. Once identified, they can be linked through reference networks.
What are ERNs and why are they important?
The EU has decided to provide support to rare diseases across the EU and to set up European Reference Networks (ERNs) focusing specifically on improving care and quality of life of patients. The Cross-border Healthcare Directive (2011/24/EU) gave the Commission the mandate to support Member States in developing ERNs between healthcare providers and centres of expertise.
By connecting highly qualified health professionals from across the EU, the aim of ERNs is to advance highly specialised healthcare and provide a concentration of knowledge and resources, especially in areas where resources are scarce, such as rare cancers.
ERNs dedicated to rare cancers would allow a centralised review system, would contribute to decrease the number of pathologic misdiagnoses and improve quality of treatment. ERNs would also allow progress on registries, clinical trials and sharing of knowledge about rare cancers between doctors (oncologists and pathologists) and patients alike.
Rare Cancers Europe is therefore calling for the creation of specific ERNs for each identified family of rare cancers.