The European Reference Networks (ERNs) have been installed by the European Union to promote the patients’ rights in cross-border health care in 2017. They are accredited networks of health care providers offering transparency and dissemination of expertise to make an individual choice for best care. The ERN for rare endocrine conditions (Endo-ERN) is the largest ERN and has the aim to bridge care from infancy to senescence. Therefore, it has an adult and a paediatric chair and, in its format, tackles each group of endocrine conditions from both angles, also including patient advocacy of childhood and adult care. Within the last five years, Endo-ERN has put its efforts on five different aims: 1. Installing and usage of the clinical patient management system for virtual consultation, 2. monitoring performance and outcome through patient registries, 3. Promotion research and innovation through connection with EU research programmes, 4. Harmonizing disease management through guideline development, as well as 5. Training and disease information through webinars and learning modules. All these aims are promoted through interaction with the scientific societies ESE and ESPE. In the future, Endo-ERN will strengthen its efforts with further linking with the societies to offer a gateway to clinical care and clinical/translational research in rare endocrine conditions. Endo-ERN will act in concert with ESE and ESPE to achieve maximal synergy for endocrine care across the life-span.
15 Sep 2022 - 17 Sep 2022