Act 2030: Pushing Boundaries for Rare
The Nordic Rare Disease Summit 2025 was held on 16 & 17 September in the heart of Copenhagen. Hosted alongside the Danish Presidency of the European Union, the Summit gathered leading experts from academia, healthcare, patient, decision-makers and industry to explore solutions and discuss how we change the agenda of rare diseases.
Despite the label of “rare,” around one million people in the Nordics are living with a rare disease, and 30 million people in Europe.
Nevertheless, many people affected by rare diseases, as well as their families and caregivers, face significant challenges in receiving a timely and accurate diagnosis, and in securing access to innovative medicines and appropriate medical and social care, often sharing a common experience of feeling marginalised.
Building on prior summits, including the most recent one in 2025, the Nordic Rare Disease Summit continues to centre patient empowerment as a key theme.
Acknowledging that the expertise of people living with a rare disease must be recognised as a vital resource, from the level of individual patients to the community and policy level.
Together, we can do more.
The 2025 Nordic Rare Disease Summit brought together key voices from across the Nordic region and beyond to advance solutions for people living with rare diseases.
Interview with Olivér Várhelyi
Commissioner for Health and Animal Welfare at the European Commission
Interview with Natasha Azzopardi Muscat
Director of the Division of Country Health Policies and Systems at the World Health Organization (WHO)
Interview with Stephanie Juran
Project manager at Rare Diseases Sweden
Interview with Katri Asikainen
President of HARSO Finland
In the largest study of its kind across the Nordic region, our 2025 survey reveals a compelling story of challenge and hope within the rare disease community.
The findings continue to inform discussion and collaboration across the region, helping shape policies and initiatives that improve the lives of people affected by rare diseases.
More information
Find out more about the Nordic Rare Disease Summit and how we got here and what we are currently up to:
About us
The Nordic Rare Disease Summit is a collaborative effort that brings together individuals and rare disease patient associations from across the Nordics and the EU, as well as academia and industry, to:
Raise awareness about the challenges faced by people living with a rare disease in the Nordics and across the EU.
Support the development of better policies and guidelines to enhance quality of life for those affected.
Share existing best practice examples and foster consensus around solutions and approaches that can be broadly implemented..
Investigate how patient empowerment can become a lever for recognising lived experience as a key resource for better policies, and help patients and their families secure better diagnostic and care outcomes.
Read more about our collaborative approach in our latest Memorandum of Understanding
For all enquiries, contact us at info@nordicrarediseasesummit.org
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