The Nordic Rare Disease Summit is a biennial event bringing together patient advocates, healthcare professionals, researchers, policymakers, and industry leaders to improve the lives of people living with rare diseases. Through shared dialogue and collaboration, the Summit aims to raise rare diseases as a national health priority across the Nordics and support progress toward an EU-wide action plan.
NRDS 2025 consists of two events:
Both events are open to in-person participants. The Summit is also open to virtual participants.
16 and 17 September 2025, Copenhagen, Denmark. The first day will take place at University of Copenhagen at Mærsk Tower. The second day – the Summit itself – will take place at Dansk Industri.
Participants typically include representatives from patient organisations, health authorities, media, academia, research institutions, the life sciences industry, healthcare professionals, and policymakers from across the Nordic region and the EU.
Yes. NRDS 2025 is a hybrid event, allowing you to join in person or follow the discussions online. Registration is required for both and can be found here.
The Summit will feature speakers from academia, healthcare, patient organisations, industry, and public policy across the Nordics and EU.
You can view the current agenda here – it will be updated regularly as speakers are confirmed.
Media professionals are invited to email NRDS2025Media@fticonsulting.com for access details, registration, and information about on-site photography and press rules.
Yes. Travel and accommodation should be arranged independently.
Public transport is recommended. Visit the venue website for directions: University of Copenhagen – Mærsk Tower
The Summit venue, Dansk Industri, is located near Copenhagen City Hall Square, Copenhagen Central Train Station, and Copenhagen City Hall Square Metro Station. The recommended way to get to Dansk Industri is to take the Metro to the City Hall Square using the M3 (City Circle Line) and M4 metro lines. You can find information in Danish about getting to Dansk Industri on their website.
We are committed to an accessible Summit. If you have questions or comments about accessibility, please contact NRDS2025Info@FTIConsulting.com.
We will coordinate with our venue partners to support your needs.
Yes. Both the Night of Science and Summit will have light meals provided. Participants can expect a light meal on the 16th and lunch box provided on the 17th. Participants should note allergies in their registration.
Though individually rare, rare diseases collectively affect over one million people across the Nordics. Many face common challenges such as delays in diagnosis, limited access to treatment, and inadequate care. Yet each journey is deeply personal. Learn more through the voices of patient advocates at organisations like EURORDIS.
Patients have been involved in shaping every step of the Summit from A to Z. Their experiences, insights, and leadership will be at the centre of our discussions and programming.
Patient empowerment means enabling people to have greater control over their care and the policies that affect them. As defined by the World Health Organization (WHO), it involves building capacity, strengthening voice, and gaining access to resources and networks. Learn more in the Nordic Rare Disease Roadmap.
Stay connected and help us spread the word by following the Nordic Rare Disease Summit on LinkedIn. We encourage you to tag us in your posts and use the hashtag #NRDS2025 to join the conversation and share your experience.
Contact us at NRDS2025Info@fticonsulting.com.
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Alexion: DK/UNB-U/0025 | Takeda: C-ANPROM/BE/NON/0022 | Sobi: NP-42181 | C-ANPROM/BE/NON/0037