AGENDA
- Night of Science
Pushing Boundaries for Rare
16 September
University of Copenhagen, Mærsk Tower
15:00 – 15:45
DOORS OPEN: Arrival of guests
16:00 – 16:15
Opening – Pushing Scientific Boundaries for Rare
Speaker:
- Bente Merete Stallknecht, Dean of the University of Copenhagen Faculty of Health and Medical Sciences
Moderator:
- Line Friis Frederiksen, Science Journalist
16:15 – 16:45
Geopolitics & Innovation: Defining Europe’s Future in Biotech and Life Sciences
Speaker:
- Olivér Várhelyi, Commissioner for Health and Animal Welfare at the European Commission
Moderator:
- Hannah Kuchler, Global Pharmaceuticals Editor at the Financial Times
16:45 – 17:15
Rare Diseases in the Nordics – Can the Nordics Be a Frontrunner and How?
Speakers:
- Niclas Jacobson, Deputy Director-General & Head of the Division for European and International Affairs, Swedish Ministry of Health
- Laura Rissanen, State Secretary to the Minister of Social Security – Finland
Moderator:
- Antoine Mialhe, EMEA head of Healthcare & Life Sciences at FTI Consulting
17:15 – 18:00
Rare Diseases in the Nordics – Trends in Scientific Discovery
Speakers:
- Anna Wedell, Professor/Senior Physician, Karolinska Institutet
- Mervi Ahlroth, Chief Executive Officer of the Finnish Biobank Cooperative – FINBB
Moderator:
- Dr. Petra Wilson, Senior Advisor at FTI Consulting
18:00 – 18:15
Welcome Remarks by Patient Partners and Industry Partners
Speakers:
- Liselotte Wesley Andersen, Patient Representative at SBONN
- Jean-Luc Delay, President Europe & Canada at Takeda
18:15 – 18:45
Keynote Talk: Can Ancient DNA Teach-Us about Rare Diseases?
Speaker:
- Martin Sikora, Globe Institute, University of Copenhagen
18:45 – 19:00
Closing Remarks
Speakers:
- Karen Ellemann, Secretary General of the Nordic Council of Ministers
- Lydia Abad-Franch, Chief Medical Officer, Head of R&D and Medical Affairs at Sobi
Moderator:
- Line Friis Frederiksen, Science Journalist
19:00 – 19:30
A light meal will be served
*Speakers to be confirmed
- Nordic Rare Disease Summit
Inspiring Hope. Together.
17 September
Dansk Industri
DOORS OPEN: Arrival of guests
Speaker:
- Inger-Margrethe Stavdal Paulsen, Chair of the Norwegian Osteogenesis Imperfecta Association
Moderator:
- Line Fris Frederiksen, Science Journalist
Rare Talks: Facing Global Uncertainties and Pushing boundaries for the future – What’s Next for Rare?
Speakers:
- Katri Asikainen, President of HARSO Finland
- Virginie Bros-Facer, Chief Executive Officer at EURORDIS-Rare Diseases Europe
- Natasha Azzopardi Muscat, Director of the Division of Country Health Policies and Systems at the World Health Organization (WHO)
Moderator:
- Hannah Kuchler, Global Pharmaceuticals Editor at the Financial Times
Patient empowerment – Highlights from the Patient Empowerment Survey
Speakers:
- Anette Remme, Senior advisor in The Norwegian Federation of Organisations of Persons with Disabilities (FFO)
- Sanna Leppäjoki-Tiistola, BBA, BEng – Volunteer patient advocacy from HARSO, Finland
- Stephanie Juran, Project manager at Rare Diseases Sweden
- Dana Vigier, Vice President Central Europe and Northen Europe Area Head Rare Disease Unit, Alexion AstraZeneca Rare Disease
- Ida Steinlein, DEBRA Norway Chair and DEBRA International Youth Council Leader
- Lena Lövqvist, Program Officer at the National Board of Health and Welfare in Sweden
Moderator:
- Gudrun Helga Hardardottir, Einstok börn
Patient empowerment Exhibition Tour
Breakout sessions
- Early Diagnosis: Olve Moldestad (Oslo University), Oskar Ahlberg (Swedish MPS Association), Dana Vigier (Alexion AstraZeneca Rare Disease), Moderator: Dr. Petra Wilson, Senior Advisor at FTI Consulting
- Access & Health Data: Tenna Toft Sylvest (XLH), Anja Schiel (Norwegian Medicines Agency), Alexander Natz (EUCOPE), Marianne Silkjær Nielsen (CompCure), Ida Sofie Jensen (Lif), Malene Fischer (NUHA), Moderator: Rasmus Gjesing (WHO)
- Implementation of National Strategies: Stein Are Aksnes (National Center for Rare Diagnoses, Norway), Lena Lövqvist (National Board of Health and Welfare), Vigdís Fjóla Stefánsdóttir (Landspítali), Gabriella Almberg (UCB), Daniel Scherman (CNRS) Moderator: Katri Asikainen (HARSO),
Networking & Lunch Break
Keynote Speech by the Minister for the Interior and Health of Denmark
Speaker:
- Sophie Løhde, Minister for the Interior and Health of Denmark
HM Queen Mary will attend in her capacity as Patron for Rare Diseases Denmark.
Innovation in Rare: Can the Nordics become the Frontrunner? Can Europe Close the Gap?
Speakers:
- Virginie Bros-Facer, CEO at EURORDIS
- Stine Bosse, Member of the European Parliament, Renew
- Malene Fischer, Nordic University Hospital Alliance
- Jean-Luc Delay, President Europe & Canada at Takeda
- Anna Wedell, Professor/Senior Physician, Karolinska Institutet
Moderator:
- Dr. Petra Wilson, Senior Advisor at FTI Consulting
Pushing the Boundaries in Science: What Can the Nordics Teach Us on the Value of Genomics Sequencing?
Speakers:
- Gudjón Reykdal Oskarsson, Researcher at Decode
- Sven-Eric Söder, General Director at Swedish National Council on Medical Ethics
- Hans Tómas Björnsson, Chief of Department, Department of Genetics and Molecular Medicine, Landspitali. Professor at University of Iceland, Associate Professor at Johns Hopkins University
- Troels Rasmussen, Senior Advisor at Danish National Genome Center
Moderator:
- Dr. Petra Wilson, Senior Advisor at FTI Consulting
Cakes & Coffee
Breakout Sessions
- Early Diagnosis: Olve Moldestad (Oslo University), Oskar Ahlberg (Swedish MPS Association), Dana Vigier (Alexion AstraZeneca Rare Disease), Moderator: Dr. Petra Wilson, Senior Advisor at FTI Consulting
- Access & Health Data: Tenna Toft Sylvest (XLH), Anja Schiel (Norwegian Medicines Agency), Alexander Natz (EUCOPE), Marianne Silkjær Nielsen (CompCure), Ida Sofie Jensen (Lif), Birgitte Rode Diness (NUHA), Moderator: Rasmus Gjesing (WHO)
- Implementation of National Strategies: Stein Are Aksnes (National Center for Rare Diagnoses, Norway), Lena Lövqvist (National Board of Health and Welfare, Sweden), Vigdís Fjóla Stefánsdóttir (Landspítali), Gabriella Almberg (UCB), Daniel Scherman (CNRS), Moderator: Katri Asikainen (HARSO)
16:30 – 17:00
Closing remarks: Handing over Hope: Passing the baton of Rare Disease recommendations to the Nordic Council of Ministers and the Next EU Presidency
- Liselotte Wesley Andersen, Patient Representative at SBONN
- Cypriot Presidency Representative*
- Muriel De Vos, Corporate Vice President, Global Medical Affairs Rare Disease at Novo Nordisk
- Virginie Bros-Facer, Chief Executive Officer at EURORDIS-Rare Diseases Europe
- Stine Bosse, Member of the European Parliament, Renew
Moderator:
- Line Friis Frederiksen, Science Journalist
17:00 – 18:00
Networking & Departure
*Speakers to be confirmed
Alexion: DK/UNB-U/0025 | Takeda: C-ANPROM/BE/NON/0022 | Sobi: NP-42181
