Endo-ERN is directed at bringing together EU expertise on rare endocrine conditions. This is set-up in a 5-year plan including 3 phases. In Year 1 – the first phase - the consortium will focus on the inventory and mapping of the knowledge base, innovation and resource capacity and quality of care (QoC) of the Member States (MS) involved. Geographical differences will be charted on knowledge and awareness gaps, relevant biobanks, trials European patient advocacy groups (ePAGs) and other initiatives will be identified. In phase 2, comprising Year 2-4, a stepwise execution will follow to implement actions addressing gaps and opportunities that are identified in Year 1. To maintain and consolidate the equalisation of the healthcare and research level, the third phase – Year 5 – will focus on ensuring long term continuation (although this will be of continuous importance throughout phases 1 and 2.

The work plan is subdivided in 5 work packages (WPs) containing the phased activities aimed at 8 main thematic groups (MGTs). For the first time in the history of endocrinology, we are bringing together paediatric and adult endocrinologists, and both are also represented in the overall management structure of Endo-ERN. Tasks aimed at overall management and coordination of the execution of the work-plan activities in Year 1 are co-funded under the FPA, of which many are aimed at the initial inventory and surveying activities. Endo-ERN will setup a specific communication and dissemination strategy aimed at all stakeholders involved in the rare endocrine disease field to ensure awareness and engagement.

The combined activities in Year 1 will foster new collaborations, grow the network and start to align all EU wide activities to an equal high level.
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Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledge, supporting and informing research, connecting various stakeholders and making agreements among stakeholders in support of excellent care. The work plan is subdivided in 5 work packages containing the phased activities aimed at 8 main thematic groups.
Two key actions were required before Endo-ERN could start to generate an impact of the patients care. First, the network needed to be consolidated and we needed to map what expertise, tools, and gaps there are among the 71 members. Second, we need to create a single, easy-access platform containing all existing and future information. Surveys in the areas of educational requirements, diagnostics, and patient’s view on care have provided a solid reference on which specific strategies can be based. These network-building and mapping and the initiation of the platform activities constitute the first of 3 phases of our 5-year plan. Indeed, the end of Endo-ERN’s 1st year concludes phase 1.
In phase 2 (Y2-4) we focus on the stepwise execution and implementation of the planning generated in phase 1. While the platform has not reached its full functional state, it will be operational for most of the intended purposes, in short order. Using the Y1 developments, the coordination actions of Y2 will yield: (1) an educational program that fits with the needs of Endo-ERN members, (2) an e-environment that supports all actions of Endo-ERN, (3) Endo-ERN influence on setting guidelines and research agendas, (4) a functional clinical support Operational Helpdesk to democratise access to high-expertise consultations that also enables linking to registries (5) a start with an interconnected diagnostic laboratory network.


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Endo-ERN builds bridges between European stakeholders around rare endocrine conditions. The actions, as defined in our 5-year plan (FPA), are geared at mitigating differences in awareness and knowledge, supporting and informing research, connecting various (types of) stakeholders and making agreements in support of excellent care. The work plan is subdivided in 5 work packages containing phased activities aimed at 8 main thematic groups. After sculpting a coherent network in Y1, key initiation actions are currently being addressed. While the platform has not reached its full functional state yet it will be operational for most of the intended purposes within Y2. This functional network will have the requirements of troubleshooting and adaptations, which will be the focus of Y3, while Y4 will be centred around internal benchmark activities. Y4 will make any gaps in the network evident that may have been overseen before the transition from a theoretical to an operational network. The Y3-4 actions under the proposed SGA will result in the integration of 5 WPs and 8 MTGs to a point of functional operations. Key features include ability to perform virtual consultations, MTG-based e-learning, endocrine overarching research strategy/agenda in line with endocrine societies, effective matching of patients and expert labs for optimal care. The final period of the framework period is geared towards mechanisms to ensure quality (of activities, outcomes and added value, and members and their efforts) as well as sustainability. For this, Endo-ERN develops internal processes and also aims to collaborate with other stakeholders (ERNs, European Commission, national ministries of health, etc) to coordinate actions for quality assurance and sustainability. It is our mission to abolish inequities in care for paediatric and adult patients and for patients in transition. This final program will ensure this mission is implemented to make it a mainstay in the European healthcare ecosystem.
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