Dear members of the international OI-community! In Australia the champagne has been uncorked already, but in the rest of the world we are in different ways preparing the celebration of another year coming to an end. It is also a celebration of the opportunities of a New Year called 2022, which we hope will be…
Interview with Rebecca Tvedt Skarberg, member of European Patient Advocacy Group (ePAG) The European Reference Networks (ERNs) are 24 virtual networks involving healthcare providers across Europe. They aim to facilitate discussion on rare diseases that require highly specialised treatment. One of these networks is the European Reference Network for Rare Bone Diseases (ERN-BOND). ERN-BOND has…
Ingunn Westerheim and Rebecca Tvedt Skarberg from Norway are the recipients of this year’s Black Pearl Volunteer Awards, an international award that recognizes their volunteer efforts for people with the rare condition osteogenesis imperfecta (OI). How it all started We do the interview on Zoom, since both ladies are at risk for Covid19. But what…
