European Reference Network on Rare Endocrine Conditions

ended

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 envisioned to be 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. Endo-ERN’s mission is to reduce and ultimately abolish inequalities in care for patients with rare endocrine disorders in Europe, through facilitating knowledge sharing and facilitating related healthcare and research. Endo-ERN provides equality between paediatric and adult patients. Ultimately, Endo-ERN will result in the best possible care for every patient with a rare endocrine condition.