ERN BOND, European Reference Network on Rare Bone Diseases, is one of 24 thematic networks co-financed by the European Union, created to improve access to care by improving a multidisciplinary and holistic approach focused on people living with rare bone diseases, by strengthening and harmonising diagnostic, therapeutic and follow-up pathways across Europe.
ERN BOND, which is led by the Complex Unit “Rare skeletal disorders” of the Rizzoli hospital, currently involves of 53 centres of excellence in 20 EU member states and has 11 centres located in Italy.
The pathologies covered by ERN BOND are rare diseases with prevalent skeletal implications (congenital, chronic and of genetic origin), affecting cartilage, bone and dentine, such as Osteogenesis Imperfecta, X-linked Hypophosphatemia, Achondroplasia and skeletal dysplasias.
Some pathologies may require a multidisciplinary approach (e.g. neurological, auditory, visual, pulmonary, cardiac, renal), therefore, they may be treated in more than one network.
Therefore, ERN BOND uses the CPMS (Clinical Patient Management System) telemedicine platform created by the European Commission, a virtual environment that respects current privacy regulations, which enables collaboration between experts from different networks and in order to formulate diagnosis, treatment pathways or treatment plans.
The availability of these networks, which ensure a uniform diagnostic pathway and the collection of clinical, radiological and molecular information, also sets the groundwork for a successful clinical research.
In the field of research and clinical trials, it also contributed to the creation of EuRR-Bone (European Registry for Rare Bone and Mineral Conditions).
ERN BOND also promotes activities to provide training and disseminate knowledge on rare bone diseases through the production of information material, conferences and webinars, for both medical professionals and patients, through the production of information material, conferences and webinars, addressed to healthcare professionals and patients.
More information on ERN BOND and their activities are available in English on the ERN BOND website.
