Events & Meetings / News / Press Releases - February 20, 2023

Launch of the Nordic Rare Disease Summit 2023

There is momentum for change. Join us to discuss how to make that change happen!

The challenges we are facing today within rare diseases are complex and extensive. To understand and overcome these, we need to work together and share knowledge across countries, between expert groups and involve people who are living with rare diseases.

On April 17, 2023, the Nordic Rare Disease Summit will bring together experts and decision makers, building on the success of the first Nordic Rare Disease Summit in 2021. The Summit will be organised during the Swedish Presidency of the Council of the European Union. A key to improving overall strategies for rare diseases in the Nordic countries is to ensure they are aligned with the European healthcare development. The European Commission’s current work within rare diseases plays an important role for the Nordic countries when developing policies and solutions to shorten time to diagnosis, strengthen the empowerment of patients and ensure access to innovative treatments.

The Nordic Rare Disease Summit 2023 is an arena for knowledge sharing and dialogue between decision makers and representatives from healthcare, patient organizations, authorities, academia, media and life science companies. At the Summit, leading experts within rare diseases from all Nordic countries and beyond will share best practices, present new findings, and discuss how to elevate the area of rare diseases in order to make a difference for the 1 million* people in the Nordics who live with a rare disease.

The Summit will result in a ‘Nordic Roadmap for Rare Diseases 2.0’. The Summit is a unique opportunity to take a major leap forward – to move from what needs to be achieved to how it will be done. The working language for the Summit is English. Digital attendance is possible.

Read more and register to participate at

Invitation to Nordic Rare Disease Summit 2023