RCWG has long held the belief that the field of rare cancers would significantly benefit from a more effective use of cross-border healthcare options and the promotion of excellence of medical and healthcare professionals. In the past, RCE (RCWG today) has been one of the foremost proponents of European Reference Networks (ERNs) and the need to increase awareness about rare cancers within this specific framework. Of these ERNs, four are directly related to rare cancers:
- ERN on rare adult cancers (ERN EURACAN),
- ERN on haematological diseases (EuroBloodNet),
- ERN on paediatric cancer (ERN PaedCan),
- ERN on genetic tumour risk syndromes (ERN GENTURIS)
The first ERN involving healthcare units were launched across 26 Member States in March 2017. They were developed with the aim of facilitating a discussion on complex or rare diseases and conditions that require highly specialised treatment, and concentrated knowledge and resources.
Currently, there are more than 900 highly specialised healthcare units from over 300 hospitals in 26 EU countries (1). The 24 ERNs are working on a range of thematic issues including bone disorders, childhood cancer and immunodeficiency. For healthcare professionals, the ERNs an opportunity for networking with like-minded experts from across Europe which is extremely advantageous considering the professional isolation that many experts in rare diseases face.
ERNs are coordinated by the Board of Member States, set up in February 2014 to approve Network proposals and healthcare providers' membership applications, evaluate and terminate Networks, and decide on loss of membership. RCE will continue to closely work with the ERNs focused on rare cancers with the aim to improve medical knowledge and improve rare cancers patient referral to centers of expertise.
- European Commission, available here