REWATCH LIVESTREAM
- Nordic Rare Disease Summit
Inspiring Hope. Together.
17 September
Dansk Industri
Opening of the Summit: The Edge of Possible: Pushing Boundaries. Inspiring hope. Together.
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
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
Breakout sessions
- 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)
Breakout sessions
- 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),
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
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
Breakout Sessions
- 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)
Breakout Sessions
- 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)
Closing remarks: Handing over Hope: Passing the baton of Rare Disease recommendations to the Nordic Council of Ministers and the Next EU Presidency
Speakers:
- 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
Alexion: EM-0555 | Takeda: C-ANPROM/BE/NON/0007 | Sobi: NP-42181
