Nordic Rare Disease Summit 2023 Report

Participants on the stage of the Nordic Rare Disease Summit 2023

The report summarizes the Nordic Rare Disease Summit 2023, arranged under the Swedish EU presidency. The main theme was “Rare diseases – setting the scene for change”.

During the summit a number of speakers representing the EU-perspective as well as several delegates outside the Nordic countries confirmed the interest in shaping policy in the rare disease area, across Europe.

A total of 663 registered participants from 33 countries were gathered to discuss three key focus areas identified at the first Nordic Rare Disease Summit in 2021 and how to put them into action: Early Diagnosis, Patient Empowerment and Access to Innovation.

Attendees included patient representatives, health care professionals, academic researchers and scientists, representatives from the pharmaceutical sector as well as healthcare leaders, policy makers and government officials.

Two main insights from the summit were the announcement that Sweden now will commence work with a first national strategy for rare diseases and that there is a strong commitment across the Nordics to collaborate to find solutions to the three key focus area.


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