ADVOCACY

Being a patient representative (ePAG) in ERN BOND

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…

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OIFE

Winners of Black Pearl Award 2021

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…

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