The European Reference Networks (ERNs) gather doctors and researchers with high expertise in the fields of rare or low-prevalence and complex diseases. They are “virtual networks” that discuss the diagnosis and the best possible treatment for patients from all over Europe. Additionally, the ERNs focus expertise to derive shared clinical guidelines, prioritise research in rare diseases and help provide a standard of education for rare diseases across Europe. Generation of disease registries for rare diseases has also been a focus in ERNs over the early years.
24 ERNs were launched in 2017, involving more than 900 highly specialised healthcare teams, located in more than 300 hospitals in 26 European countries. The objectives of the ERNs are summarised below.
CEDAM harbours clinicians and scientists that are core to delivering the objectives of multiple ERNs within the domain of CEDAM. Rare diseases research and clinical service provision has fuelled our ability to be recognised as one of the few centres across Europe to be accredited for delivering rare disease services in all aspects of endocrinology (ENDO-ERN), inherited metabolic disorders (MetabERN) and rare bone diseases (ERN-BOND).
ERN-wide secure clinical portal (Clinical Patient Management System; CPMS) for discussing rare and complex clinical problems to ensure inclusive and considered view of rare and complex cases by international experts. The patient does need to travel to derive a rounded clinical opinion and management plan.
Delegates at the Endo-ERN General Assembly 2019.