Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are
over 300 rare cancer types which may affect all organs. A variety of histological and molecular subtypes are emerging
following the progresses of genomic classifications.
EURACAN is a patient centered ERN dedicated to the improvement of diagnosis, treatment management, knowledge,
research and communication on all adult solid rare cancers for patients, families, physicians and all stakeholders. EURACAN
will work on excellence guidelines, their implementation, innovation, research, patient pathways, cross border health care,
and patient communication. EURACAN gathers 67 centers from 18 EU countries. These centers were identified on the basis
of documented expertise, accrual in rare cancers, and endorsement by their member state.
EURACAN aims to open to additionnal centers, to expand to all EU countries and to host at least health care provider expert
for a domain for a region of 5-10 million inhabitants. EURACAN has also invited associated partners from major scientific
societies, ESMO, ECCO, ESSO, EORTC, and major patient advocacy groups to participate to the different network bodies.
EURACAN will interact with other ERN with related topics, in particular benign conditions.
In EURACAN, rare adult solid cancers were grouped in 10 domains corresponding to the RARECARE classification:
sarcomas, rare gynecological cancers, rare urological cancers, neuroendocrine tumors, rare digestive cancers, endocrine
tumors, rare head and neck, thoracic, skin, ocular and brain cancers.
EURACAN will propose a unique network to all European patients affected with rare cancers in all member states enabling
an optimal care, access to rare resources, education, innovation and research to all EU patients.
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Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are
over 300 rare cancer types which may affect all organs. A variety of histological and molecular subtypes are emerging
following the progresses of genomic classifications.
EURACAN is a patient centered ERN dedicated to the improvement of diagnosis, treatment management, knowledge,
research and communication on all adult solid rare cancers for patients, families, physicians and all stakeholders. EURACAN
will work on excellence guidelines, their implementation, innovation, research, patient pathways, cross border health care,
and patient communication. EURACAN gathers 67 centers from 18 EU countries. These centers were identified on the basis
of documented expertise, accrual in rare cancers, and endorsement by their member state.
EURACAN aims to open to additionnal centers, to expand to all EU countries and to host at least health care provider expert
for a domain for a region of 5-10 million inhabitants. EURACAN has also invited associated partners from major scientific
societies, ESMO, ECCO, ESSO, EORTC, and major patient advocacy groups to participate to the different network bodies.
EURACAN will interact with other ERN with related topics, in particular benign conditions.
In EURACAN, rare adult solid cancers were grouped in 10 domains corresponding to the RARECARE classification:
sarcomas, rare gynecological cancers, rare urological cancers, neuroendocrine tumors, rare digestive cancers, endocrine
tumors, rare head and neck, thoracic, skin, ocular and brain cancers.
EURACAN will propose a unique network to all European patients affected with rare cancers in all member states enabling
an optimal care, access to rare resources, education, innovation and research to all EU patients.


Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are over 300 rare cancer types which may affect all organs. A variety of histological and molecular subtypes are emerging following the progresses of genomic classifications. EURACAN is a patient centred ERN dedicated to the improvement of diagnosis, treatment management, knowledge, research and communication on all adult solid rare cancers for patients, families, physicians and all stakeholders. EURACAN will work on excellence guidelines, their implementation, innovation, research, patient pathways, cross border health care, and patient communication. EURACAN gathers 67 centres from 18 EU countries. These centres were identified on the basis of documented expertise, accrual in rare cancers, and endorsement by their member state. EURACAN aims to open to additional centres, to expand to all EU countries and to host at least health care provider expert for a domain for a region of 5-10 million inhabitants. EURACAN has also invited associated partners from major scientific societies, ESMO, ECCO, ESSO, EORTC, and major patient advocacy groups to participate to the different network bodies. EURACAN will interact with other ERN with related topics, in particular benign conditions. In EURACAN, rare adult solid cancers were grouped in 10 domains corresponding to the RARECARE classification: sarcomas, rare gynaecological cancers, rare urological cancers, neuroendocrine tumors, rare digestive cancers, endocrine tumors, rare head and neck, thoracic, skin, ocular and brain cancers. EURACAN will propose a unique network to all European patients affected with rare cancers in all member states enabling an optimal care, access to rare resources, education, innovation and research to all EU patients.
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This project aims to set-up a clinical registry for the European Reference Network (ERN) on Rare Adult Cancers (EURACAN) which is focusing on 10 out of the 12 families of rare cancers, each corresponding to a EURACAN “domain”.
This project will:
1. Develop the IT infrastructure of the Registry exploiting tools defined by the European Rare Disease Registry Infrastructure. The IT will be interoperable with other rare disease registries and compliant with the FAIR (findable, accessible, interoperable and reusable) principles.
2. Identify the core data set for each of the EURACAN domain. The core data set will include data on patient characteristics, exposure (disease, devices, procedures, treatments etc.) and outcomes. Standard terminology will be used to ensure the “semantic” interoperability.
3. Address ethical, legal and privacy issue to ensure the data collection establishing a legal structure to ensure legal agreements between all partners involved (related to use of data, IP, confidentiality, etc.).
4. Define the Registry governance to clarify the rules and procedures to access and manage the Registry.
5. Develop the sustainability strategy to secure future funding for data acquisition and management at the end of this project.
Different stakeholders including EURACAN members; rare cancer patients; researchers (including all disease-based collaborative groups for clinical and translational research on rare adult solid cancers); scientific societies will be informed and engaged in setting up and, more important, fully use the Registry also after the end of this project.
At the end of the project an infrastructure for the data collection will be available together with rules for transfer, accessing and use the data collected.
Within this project, the EURACAN Registry will start to prospectively collect clinical information on the entire patient journey, in order to increase knowledge on rare adult cancers and to support clinical research.

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Rare cancers (defined as an incidence <6/100000/yr) represent 20% of adult cancers but 30% of cancer mortality. There are over 300 rare cancer types which may affect all organs. A variety of histological and molecular subtypes are emerging following the progresses of genomic classifications.
EURACAN is a patient centered ERN dedicated to the improvement of diagnosis, treatment management, knowledge, research and communication on all adult solid rare cancers for patients, families, physicians and all stakeholders. EURACAN will work on excellence guidelines, their implementation, innovation, research, patient pathways, cross border health care, and patient communication. EURACAN gathers 67 centers from 18 EU countries. These centers were identified on the basis of documented expertise, accrual in rare cancers, and endorsement by their member state.
EURACAN aims to open to additionnal centers, to expand to all EU countries and to host at least health care provider expert for a domain for a region of 5-10 million inhabitants. EURACAN has also invited associated partners from major scientific societies, ESMO, ECCO, ESSO, EORTC, and major patient advocacy groups to participate to the different network bodies. EURACAN will interact with other ERN with related topics, in particular benign conditions.
In EURACAN, rare adult solid cancers were grouped in 10 domains corresponding to the RARECARE classification: sarcomas, rare gynecological cancers, rare urological cancers, neuroendocrine tumors, rare digestive cancers, endocrine tumors, rare head and neck, thoracic, skin, ocular and brain cancers.
EURACAN will propose a unique network to all European patients affected with rare cancers in all member states enabling an optimal care, access to rare resources, education, innovation and research to all EU patients.

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