by sabine | Nov 25, 2020 | Publication
Background Rare disease registries are essential platforms for improving knowledge of rare conditions, supporting research, facilitating collaboration between healthcare professionals, and enabling clinical benchmarking. With the increasing number of rare disease...by sabine | Aug 1, 2020 | Publication
Background European Reference Networks (ERNs) aim to improve access to specialised healthcare and expertise for patients with rare and complex diseases. Within endocrinology, the European Reference Network on Rare Endocrine Conditions (Endo-ERN) brings together expert...