European Reference Network on Rare Endocrine Conditions

ongoing

The mission of the European Reference Network for Rare Endocrine Condition (Endo-ERN) is to reduce and ultimately abolish inequalities in care for patients with rare endocrine disorders in Europe, by improving knowledge sharing and facilitating rare disease healthcare and research. The objectives of Endo-ERN are defined in 9 Work Packages (WP), and are delivered through the 8 condition specific Main Thematic groups (MTGs). While Endocrinology is divided between paediatric and adult care, Endo-ERN is dedicated to high-quality care across the patient’s lifespan, with the ambition to minimize disruption to care during transition from paediatric to adult services. Patient and parent representatives are involved in all network activities, lending their personal experience to the relevant disease areas. This proposal supports the Endo-ERN project for another 48-month period. It implements the EU4Health Programme’s general objective of strengthening health systems (Article 3, point (d)) through the specific objectives defined in Article 4, points (f), (g) and (i) of Regulation (EU) 2021/522.This ensures the continuity of the project function and on-going development and improvement of Endo-ERN and key work activities, including the implementation of a continuous quality of care improvement cycle that will foster relevant research activities with a pivotal role for EuRRECa, the European Registries for Rare Endocrine Conditions. As such, the network will continue to provide patients with rare endocrine conditions and their health care professionals / providers access to the expert network for possible diagnosis and treatment recommendations, as well as continuing knowledge generation in the form of training, and research which will ultimately improve the treatment of rare endocrine conditions. Ultimately, Endo-ERN will result in the best possible care for every patient with a rare endocrine condition, no matter where they live.