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European Reference Network on Rare Endocrine Conditions [Endo-ERN] [811570] - Operating Grant
Project abstract

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.