Act 2030: Pushing Boundaries for Rare
Held at the heart of Copenhagen on 16 & 17 September, alongside the Danish Presidency of the European Union, the 2025 Nordic Rare Disease Summit gathered the leading experts within academia and healthcare professionals, patients, decision-makers and industry to discuss solutions; with the joint aspiration of improving the quality of life for people living with 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 securing access to innovative medicines and appropriate medical and social care, often sharing a common experience of feeling marginalised.
Building on prior summits in 2021 and 2023, the 2025 summit ‘pushing boundaries for rare’ will centre patient empowerment as a key theme.
The expertise of people living with a rare disease must be acknowledged as a resource from the level of individual patients to that of the community, and as a foundation for policymaking in the Nordics and the European Union. Together we can do more.
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.
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 2025 is proud to be a collaborative effort, bringing together individuals and rare disease patient associations from across the Nordics and EU, academia and industry to:
Raise awareness about the challenges faced by people living with a rare disease in the Nordics and across the EU and support the development of better policies and guidelines, enhancing the quality of life for those living with rare diseases in the region
Share existing best practice examples and foster consensus around solutions and approaches that should be broadly implemented
Investigate how patient empowerment can become a lever for recognising lived experience as a key resource for better policies, and in be used as a resource for patients and their relatives to secure better outcome of diagnostic and care
Read more about our collaborative approach in our Memorandum of Understanding, here
For media enquiries:
For media enquiries, contact us at:
NRDS2025Media@fticonsulting.com
For general enquiries:
For general enquiries, contact us at:
NRDS2025Info@fticonsulting.com
Alexion: DK/UNB-U/0025 | Takeda: C-ANPROM/BE/NON/0022 | Sobi: NP-42181