09.00-10.00
10.00-10.55
10.00-10.20
Welcome
Video followed by 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 in Sweden
10.20-10.25
Introduction to program
Line Friis Frederiksen, biologist, science journalist
10.25-10.40
Improving conditions for people with rare diseases in the Nordics and in Europe. A political perspective
Acko Ankarberg Johansson, Minister for Health Care, Sweden
10.40-10.55
Innovating for people living with rare disease – Why partnerships and incentives matter in the context of EU orphan medicinal products regulation
Alexander Natz, Secretary General EUCOPE - The European Confederation of Pharmaceutical Entrepreneurs
Pernille Weiss, Member of European Parliament, Denmark
10.55-11.45
10.55-11.45
Equal opportunities for people with rare diseases: How do we go from “what” to “how”?
Video followed by 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
11.45-12.35
12.35-14.05
PATIENT EMPOWERMENT, EARLY DIAGNOSIS, Patient´s access to innovation
12.35-13.05
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
13.05-13.35
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
13.35-14.05
Patient's Access to Innovation
How the Nordic countries align with the European ORPH-VAL principles for assessment of 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 Dental and Pharmaceutical Benefits Agency
14.05-14.30
coffee break
14.30-16.20
Breakout sessions
14.30-16.20
Breakout sessions will constitute of four parallel streaks – Early diagnosis, Patient Empowerment, Access to innovation and EU Pharma Package
Each breakout session will be opened with a brief keynote speech, followed by a discussion between three panelists. Delegates will be invited to pose questions.
Early Diagnosis
Quality registries: How can quality registries and pooling of data help the diagnostic journey?
Moderator: Anna Nergårdh, physician and specialist in cardiology and internal medicine, Senior Healthcare Advisor, Rud Pedersen
Keynote speaker: Marie Stenmark Askmalm, Senior Physician, Clinical Genetics, Skåne University Hospital
14.30 - 15.10 – Panel 1
15.30 - 16.10 – Panel 2
PATIENT EMPOWERMENT
Strengthening patient representativeness: How do we build a strong foundation for the future patient organizations reflecting on patient representativeness?
Moderator: Hans Winberg, Secretary General, Leading Healthcare
Keynote speaker: Stephanie Juran, Project Manager, Researcher, Rare Diseases Sweden
14.30 - 15.10 – Panel 1
15.30 - 16.10 – Panel 2
access to innovation
Managing limited evidence: How do we ensure timely access to treatments when available evidence is limited?
Moderator and keynote speaker: Amanda Whittal, Lead Consultant, Dolon – Consultancy specialising in Rare Diseases
14.30 - 15.10 – Panel 1
15.30 - 16.10 – Panel 2
EU-level
EU Pharma package: How will the Nordic countries be impacted and how do we make our voice heard?
Moderator: Adam Hutchings, CEO of DOLON – Consultancy specialising in Rare Diseases
Keynote speaker: Katja Murray, Senior Director, Strategic Communication, Healthcare & Life Science, Europe, FTI Consulting
14.30 - 15.10 – Panel 1
15.30 - 16.10 – Panel 2
16.20-17.00
16.20-17.00
Next steps & ownership for change
Dialogue with the Nordic Network for Rare Diseases under 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
17.00