COVID-19 emergency: actions implemented in the Italian context

Series of webinars on COVID-19 and rare bone diseases

ERN BOND organised a series of webinar on COVID-19 issues and rare bone disorders. The initiative is part of the Rare Disease Day 2021 campaign and has been developed in collaboration with As.It.O.I. (Osteogenesis Imperfecta Italian Association), A.C.A.R. (Italian Association on Multiple osteochondromas, Maffucci syndrome and Ollier disease) and UNIAMO FIMR (Italian federation of Rare Diseases Patients Associations) and with the patronage of FondazioneTelethon  (Italian non-profit organisation fostering rare disease research) and BBMRI.it (the Italian node of the European research infrastructure for biobanking).

All the webinars will be in Italian.

Creation of a dedicated helpline for patients and clinicians

ERN BOND coordination team and Italian BOND HCPs have set up an informal helpline for RBD patients and clinicians in the Intensive Care Units and / or COVID-19 devoted wards that are treating / will treat patients affected by rare bone diseases, in particular OI patients.

A devoted mobile number +39 331 1728796 (available 24 hours a day) that professionals can call in case they need information and advice on RBD patients with COVID-19. Other Italian BOND HCPs have been involved in this helpline, in order to create an extensive network of experts in the field of rare bone diseases able to provide assistance, according to different needs.

This initiative has been developed also in collaboration with the Italian OI association (As.It.O.I.) and the Italian federation of Rare Diseases Patients Associations (UNIAMO FIMR).  At the moment, the helpline is available only in Italy, but the possibility to replicate it in other countries is currently under discussion.

Meet the BOND experts involved: