AGENDA
- 16 September 2025
- 16 September 2025
A Night of Science: Curiosity, Courage,
Persistence and the Rare Journey
17:00 – 17:15
Pushing Scientific Boundaries for Rare:
Opening by a representative from the Danish EU Presidency
17:15 – 17:35
Rare Diseases in the Nordics – can the Nordics be a frontrunner and how?
Speaker:
- Swedish Minister of Health, Acko Ankarberg Johansson
17:35 – 18:15
Rare Diseases in the Nordics – trends in scientific discovery
Speaker:
- Karolinska
- Rigshospitalet
18:15 – 18:30
Welcome remarks: by patient partners and industry partners
Speakers:
- The Nordic rare disease associations under the umbrella SBONN & an industry speaker
18:30 – 19:00
A light meal will be served
19:00 – 20:00
Keynote talks: Can Ancient DNA teach-us about Rare Diseases?
Speakers:
- Keynote speakers [TBC]
20:00 – 20:15
Closing remarks
Speakers:
- Nordic Council of Ministers [TBC]
- 17 September 2025
NORDIC RARE DISEASE SUMMIT: The Edge of Possible: Pushing Boundaries. Inspiring Hope. Together.
8:00 – 8:40
Arrival of guests & registration
8:45 – 9:00
Opening the Summit
Speakers:
- Moderator, Line Friis Frederiksen
- SBONN
9:00 – 9:45
Rare Talks: Facing Global Uncertainties and Pushing Boundaries for the Future – What’s Next for Rare?
- Patient perspective
- European perspective
- Global WHO perspective
Speakers:
- Katri Asikainen, SBONN
- European Commission perspective [TBC]
- WHO Regional Europe [TBC]
9:45 – 10:15
Patient empowerment – Highlights from Patient Empowerment Survey
Speakers:
- SBONN & FTI Consulting
10:15 – 10:25
Coffee break
10:30 – 11:45
Break-out sessions:
- Early Diagnoses
- Implementation of National Strategies
- Access and health data
Speakers:
- TBC
11:45 – 12:55
Lunch & networking
13:05 – 13:20
Keynote speech by the Minister for the Interior and Health of Denmark
Speaker:
- Sophie Løhde, Minister for the Interior and Health of Denmark
13:25 – 14:00
Innovation in Rare – Can the Nordics become the frontrunner?
Speakers:
- EURORDIS [TBC]
- Stine Bosse, Member of the European Parliament, Renew [TBC]
- Karolinska [TBC]
- Industry speaker [TBC]
14:00 – 14:35
Pushing Boundaries in Science: What can the Nordics teach us on the value of genomics sequencing?
Speakers:
- Speakers from UK, Sweden and Iceland [TBC]
14:35 – 15:00
Cakes & Coffee
15:00 – 16:20
Break-out sessions:
- Early Diagnoses
- Implementation of National Strategies
- Access and health data
Speakers:
- TBC
16:30 – 17:15
Closing remarks: Handing Over Hope: Passing the Baton of Rare Diseases Recommendations to the Nordic Council of Ministers and the Next EU Presidency
17:15 – 18:00
Departure & networking
Our Lead Partners
Our Steering Partners
Our Supporters
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