Video recordings


Opening remarks led by:
Ricardo Marek, President Europe & Canada, Takeda
Caroline Åkerhielm, Chair, Rare Diseases Sweden
Johan Färnstrand, CEO, Lif - the research-based pharmaceutical industry inSweden

Opening remarks: Ricardo Marek

Opening remarks: Caroline Åkerhielm

Opening remarks: Johan Färnstrand

Improving conditions for people with rare diseases in the Nordics and in Europe. A political perspective

Led by:
Acko Ankarberg Johansson, Minister for Health Care, Sweden

Acko Ankarberg Johansson

Innovating for people living with rare disease – Why partnerships and incentives matter in the context of EU orphan medicinal products regulation

Led by:
AlexanderNatz, Secretary General EUCOPE - The European Confederation of Pharmaceutical Entrepreneurs
Pernille Weiss, Member of European Parliament, Denmark

Alexander Natz & Pernille Weiss

Equal opportunities for people with rare diseases: How do we go from “what” to “how”?

Panel discussion involving:
Birthe Byskov Holm, Chair, Rare Diseases Denmark
Professor Anna Wedell, MD, Director of Precision Medicine Center, Karolinska University Hospital
Satu Wedenoja, Chief Physician, The Finnish Institute for Health and Welfare (THL)
Yann Le Cam, CEO of EURORDIS – Rare Diseases Europe
Elham Pourazar, Strategist, Innovation and partnership, Region Västerbotten

Birthe Byskov Holm, Anna Wedell, Satu Wedenoja, Yann Le Cam, Elham Pourazar

Patient Empowerment

Opportunities and rights for people with rare diseases – Geir Lippestad, Lawyer, rare disease advocate, Norway

The value of bringing in the patient perspective when forming a national strategy for rare disease – Lene Jensen, Chief Executive Officer, Rare Diseases Denmark

Bringing medicines to people living with a rare disease – a joint responsibility – Tony Hoos, Head of R&D and Medical Affairs and Chief Medical Officer, Sobi

Geir Lippestad, Lene Jensen, Tony Hoos

Early Diagnosis

The role of registries in early diagnosis, introductory remarks by Sheela Upadhyaya, Chair of Together4RD Steering Group, Special Adviser to FIPRA International

Katri Asikainen, CEO, HARSO - The Finnish Alliance of Rare Diseases and Disabilities Organizations
Victor Maertens, Government Affairs Manager, EUCOPE, Together4RD Steering Group member
Walter Atzori, Senior Director, Head of International Patient Advocacy, Alexion AstraZeneca Rare Disease

Sheela Upadhyaya, Katri Asikainen, Walter Atzori, Victor Maertens

Patient's Access to Innovation

Howthe Nordic countries align with the European ORPH-VAL principles for assessmentof medicines for rare diseases, by Adam Hutchings, CEO Dolon

Panel discussion involving: 
Yann Le Cam, CEO EURORDIS – Rare Diseases Europe
Ricardo Marek, Member of EFPIA -The European Federation of Pharmaceutical Industries and Associations Board, President Europe & Canada Takeda
Jørn Schultz-Boysen, Vice President, HAE Scandinavia
Lars Ehlers, CEO, Nordic Institute for Health Economics
Anna Alassaad, Senior Coordinator, The Dentaland Pharmaceutical Benefits Agency

Adam H, Yann Le C, Ricardo M, Jørn S-B, Lars E, Anna A

Next steps & ownership for change

Dialogue with the Nordic Network for Rare Diseasesunder the Nordic Council of Ministers

Anders Olauson, Founder of Ågrenska, Delegate Nordic Network for Rare Diseases
Ludovic Helfgott, Executive Vice President, Rare Diseases, Novo Nordisk
Professor Mikko Seppänen, Chief Physician, HUS Rare Disease Center
Truls Vasvik, Member of The Standing Committee on Health and Care Services in the Norwegian Parliament
Lena Lövqvist, PhD. Programme Officer at the Unit of Highly Specialized Care, The National Board of Health and Welfare, Sweden

Anders O, Ludovic H, Mikko S, Truls V, Lena L