EURACAN is the ERN for adult rare solid cancers: 1 of the 24 ERNs working on a range of thematic issues, gathering the largest network of active EU centers involved in the management of patients with rare adult cancers. EURACAN is a patient-centered multi-domain ERN that distinguishes rare cancers into 10 domains corresponding to the 10th revision of the International Statistical Classification of Diseases and Related Health Problems (ICD10), RARECARE and RARECAreNet projects. The management of rare cancers poses significant diagnostic challenges, sometimes with major consequences for patients’ quality of life and outcome.
Rare cancers are heterogeneous tumours in terms of histology and organs of origin. Molecular classifications are rapidly progressing in all types of cancers, including rare cancers, introducing an additional layer of complexity which needs to be taken in account for the optimal patient management: fragmentation of rare cancers is therefore a strong trend in rare tumours.
In centres of EURACAN, not all expertise may be present in the core and extended multidisciplinary groups of the different domains. Therefore, collaboration between EURACAN full members and also forthcoming affiliated centres will be implemented to enable full coverage of such expertise in all domains.
The definition of core multidisciplinary teams and extended multidisciplinary teams is specific to each domain and is related to the nature of the disease, its stage, its curability and therapeutic options.
Three angles were considered to define the core and the extended centre multidisciplinary teams specific for each domain:
- The need for a timely accurate histological and molecular diagnosis.
- The integration of the patients in an efficient therapeutic pathway of excellence.
- The specific requirements of tumour treatments in each domain
The participation of core multidisciplinary teams should be as early as possible for all patients, ie. at the time of initial histological diagnosis and before any surgical procedure are undertaken: all specialties must therefore be present and involved in the first steps of management. Depending on the type of disease, additional specialists may be required in this core team.
As expected, the extended multidisciplinary specialist team will also vary in the different domains: organ specialists, nutritionist, rehabilitation medicine, stomatherapist, palliative care specialist, medical oncologists involved in early phase clinical trials, social workers maybe part of these extended teams.
When these different specialties are not available on a single site, organized cooperation between two or more reference centers, or between affiliated centers (one or more) and a full member of EURACAN may take place. This will be a key strategy of EURACAN to enable the efficient integration of affiliated centers in the activities of EURACAN.
European Patient Advocacy Groups (ePAGs) will actively participate in the governance of the ERN for adult rare solid cancers: participating in the EURACAN Board, Steering Committee, and different subgroups working on the 10 domains. ePAGs will also be represented in the Task Forces, on Clinical Guidelines, Funding, Research, Education/training, and Communication and Dissemination.
This construction of a network of communication across all European Patient Advocacy Groups (ePAGs) in Europe on the theme of rare cancer will represent a key objective of the task force of the ePAGs associated with EURACAN. Through their dedicated task force, the role of these associated ePAGs will be to liaise with a larger group of national or regional patient advocacy groups.
The establishment of ePAGs for all ERN disease groupings has been initiated and is coordinated by EURORDIS.
This “network” dedicated to rare cancer, will represent a unique opportunity to disseminate communication tools and resources to the broadest group of patients in the general population. Access to information on rare cancers will therefore be facilitated and communication strategy towards patients affected with rare cancers would be elaborated.
The other role of the European Patient Advocacy Groups (ePAGs) will be the contribution to the elaboration of a communication strategy towards general practitioners and primary care physicians and nurses, occasionally in charge of treating patients affected with rare cancers, as part of their role in the education/training task force. ePAGs will also participate to the elaboration of the funding strategy for EURACAN receiving input from the EURACAN Scientific Advisory Board.
The ePAG group will contribute to the definition of the scientific strategy in particular for clinical research, but also economic, translational and basic research. Finally, the Patient Advocacy Groups (ePAGs) will contribute to the interactions with the health authorities of the different member states together with EURACAN Board when political decisions on health care organisations may be needed. Confirmed Associate Partners include: the European Cancer Patient Coalition (ECPC), International Brain Tumor Alliance (IBTA) and the EURORDIS – Rare Diseases Europe.