On February 8th a European Parliament event took place, hosted by Member of Parliament (MEP) Frédérique Ries and organised in collaboration with EURORDIS. The event was in the framework of Brussels Rare Disease Week 2023, to reflect on how the EU can ensure that more and better treatments are available, accessible and affordable for people…
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…
This text was originally given as a keynote speech by Rebecca Tvedt Skarberg at the Rare2030 conference in February 2020. It was later published as the editorial in OIFE-Magazine 1-2020. “It has been a great honour to be a part of Rare2030. Building tomorrow’s roadmap for rare diseases is a project close to my heart, simply…
