Policy and Advocacy
ECPC attends RCE event on European Reference Networks for Rare Cancer Patients
The future of European Reference Networks (ERN) and their application on rare cancers was discussed during the Rare Cancers Europe (RCE) meeting, which took place on the 24th of March 2015 in Brussels.
ECPC contributed to the discussion through the participation of ECPC Public Affairs Coordinator Francesco Florindi and ECPC Project Office Kalliopi Christoforidi. ECPC has a long-standing and well affirmed expertise in the field of rare cancers, being a fundamental partners in the EU funded project RARECAREnet and as a cooperating organisation within RCE.
At present, rare cancers represent 22% of all cancer cases in the EU. However, despite this alarming percentage, rare cancers still pose particular challenges due to their low frequency and specificity: late or incorrect diagnosis, lack of access to appropriate therapies and clinical expertise, limited information about them and a dearth of clinical trials.
This is why effective networking and cooperation in healthcare and research is essential to improve outcomes. This can be achieved with the creation of European Reference Networks (ERNs) which will ensure a more effective and coordinated sharing of resources and expertise.
During the meeting, Dr. Enrique Terol from DG SANTE, introduced the work already done with regards to the ERNs and shared the key recommendations and challenges (mainly funding issues and Member state collaboration) of this EC initiative. Dr. Paolo Casali highlighted the importance of setting up an appropriate amount of ERNs for rare cancers in order to make sure that all 12 big families of rare cancers are represented.
Having gained valuable experience from the RARECAREnet project in the field of rare cancers, ECPC agrees there are considerable differences in the modalities and expertise needed to treat each rare cancer. Therefore, it is necessary to ensure that each rare cancer patients’ family would be recognised by the European Commission and hence obtain the organisation of a specific ERN. ECPC demonstrates its willingness to collaborate with all parties to identify the optimal number of ERNs that will ensure the quality of care that rare cancers patients deserve. With a network of 145 rare cancer patient organisations all over Europe, ECPC is committed to being the voice of rare cancer patients and wants to involve its members to give feedback in the process of evaluating and defining new ERNs.