Benefits and added value expected to be delivered by EURACAN

EURACAN gathers the largest network of active EU centers involved in the management of patients with rare adult cancers. EURACAN is a multi-domain ERN, bringing together different branches of rare cancers, based on histological and organ of origin classifications. Each branch includes HCPs with experience in networks, establishing guidelines, clinical trials, and development of research projects. Several of these centers are connected into national networks, allowing for either country-level or international coverage. Additional full & affiliated centers will later join EURACAN.

The objectives of euracan are to improve the quality of care of all eu patients affected with rare cancers, and to ensure an optimized and homogenous care and access to innovation in the member states.

THE BENEFITS AND ADDED VALUE OF EURACAN

1) sharing tools developed by pre-existing networks to disseminate successful experiences across EURACAN,

2) establishing the EU definition of reference center for rare cancers, using resource and activity based criteria (N of pts, multidisciplinarity, link with research),

3) establishing regularly updated diagnostic and therapeutic CPGs,

4) developing EURACAN in all EU countries and regions by identification of new full and affiliated members,

5) promotion of patient referral systems to and between reference centers, and across borders when needed,

6) updated anonymized databases of rare cancer incidences and research tumor banks

7) development of education, training tools and resources for patients, non-specialized and specialized physicians,

8) Promoting new research programs and collaborations with all relevant stakeholders (PAGs, OECI, EORTC, scientific societies, research groups etc) and also with pharmaceutical industry.

IN 5 YEARS, EURACAN AIMS TO ACHIEVE

1) the implantation of full member centers in all EU countries,

2) a referral system across HCP countries,

3) with at least 75% of EU patients with rare tumors treated in EURACAN,

4) demonstrated improved quality (delay,diagnosis accuracy, adhesion to CPGs, in reference centers,

5) a demonstrated improvement of patient survival,

6) communication tools available in all languages for patient and physicians,

7) a set of multinational databases and tumor banks for rare tumors, coupled with research projects.

 

Involvement of patient’s organization

URACAN is a patient centered network. Its primary aims are

1) to facilitate the access of patients affected with rare cancer to information on the disease, optimal treatment, and access to expert centers,

2) to ensure their optimal diagnosis & treatment delivered in a timely manner, including the access to diagnostic and therapeutic excellence & innovation;

3) To develop the network of reference centers enabling coverage of the member states of the European Union, and when necessary collaborations across borders for patient cares.

 

These 3 aims require the participation of patient representatives. Patient advocacy groups (PAGs) will be associated members of EURACAN, participating to the Board of EURACAN, to the steering committee, and to the different subgroups working on the 10 domains. PAGs will also be represented in the Task Forces, on clinical guidelines, funding, Research, Education/training, and of course Communication/links with PAGs. It is expected that the European Coalition of Patients with Cancer, and at least one or more PAGs per domain will join. This group of PAGs will therefore participate actively to the board of EURACAN.

This construction of a network of communication across all PAGs in Europe on the theme of rare cancer will represent a key objective of the task force of the PAGs associated with EURACAN. Through their dedicated task force, the role of these associated PAGS will be to liaise with a larger group of national or regional patient advocacy groups. This "network of PAGs" 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. This roup of PAGs will be elaborating the communication strategy towards patients affected with rare cancers.

The other role of the PAGs 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. PAGs will also participate to the elaboration of the funding strategy for EURACAN, eg for the implementation of the CPGs, and for the development of research programs, receiving input from the EURACAN Scientific advisory board. Indeed, the PAG group will contribute to the definition of the scientific strategy in particular for clinical research, but also economic, translational and basic research. Finally, they 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. Participating PAGs: European Cancer Patient Coalition (ECPC), International  Brain Tumor association (IBTA) Sarcoma Patient Euro NET(SPAEN) have already confirmed their participation as associate partners.

BACK TO HOMEPAGE

EURACAN network

 

 

 

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