Update on the European Reference Network (ERN) for rare bone diseases (BOND)
The new European Reference Network (ERN) for rare bone diseases (BOND) was kicked off at the third ERN conference in Vilnius, Lithuania on 10 March 2017. Osteogenesis Imperfecta (OI) is represented in the BOND ERN, and OIFE patient representative Rebecca Tvedt Skarberg (from Norway) was present in Lithuania to influence and report back to the OI community. The BOND network is led by dr. Luca Sangiori from Italy.
Osteogenesis Imperfecta (OI) has been chosen as one of the pilot diagnoses when it comes to developing the new network. More information about this and the BOND ERN will feature in the next OIFE newsletter, and we will keep members updated.
The same information is featured in this video from the EU Commission: http://ec.europa.eu/…/sante/health/ern/ern_videoclip_sub.mp4