On 15th December the Board of Member States of European Reference Networks (ERNs) voted to approve 23 ERN proposals submitted under the first wave.
BOND, the European Reference Network on Rare Bone Diseases is one of them. BOND combines skeletal dysplesias and metabolic bone diseases and its application has been coordinated by the ISDS, ESPE, ICCBH, ESE and ECTS.
European Reference Networks (ERNs) create a clear governance structure for knowledge sharing and care coordination across the EU. They are networks of centres of expertise, healthcare providers and laboratories that are organised across borders. A centre of expertise could be a clinical team, a medical centre or a hospital and must be formally accredited by its Member State.
Due to the low prevalence and complexity of rare diseases, as well as to the nature of small and scattered patient populations, the system of ERN that is being established can bring real added value to rare disease patients. By ensuring doctors have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care pathways. This in turn contributes to improvements in clinical outcomes and the quality of life of people living with a rare disease.
You can read more about BOND in a presentation from Dr Luca Sangiorgi, ERN Coordinator.