Rebecca Tvedt Skarberg, ERN BOND ePAG, is chair of Rare Disease Day conference in Norway. This years event will be held digital (in Norwegian).
The Norwegian Minister of Health will be opening the event.
- the need for better coding and registry;
- working through national and European networks and how to embed them in national healthcare system;
- providing services for coping and QoL resources for PLWRD.
Info and registration: https://www.ffo.no/arrangementer/sjeldendagen-28.-februar-2022/
Updates and teasers from the event (and video portraits) will be shared here.
The event will be texted in Norwegian, for hearing impaired, and shared on this YouTube channel after the event.