Sundhedsudvalget 2022-23 (2. samling)
SUU Alm.del Bilag 82
Offentligt
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Nordic Rare Disease Summit 2023
Draft Agenda
17th April 2023, 7A Posthuset, Stockholm
09.00 - 10.00
Registration and light breakfast
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10.00
–
11.00
OPENING SESSION
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10.00 - 10.20
Welcome
Video followed by opening remarks led by
Ricardo Marek, President Europe & Canada, Takeda
Caroline Åkerhielm, Chair, Rare Diseases Sweden
On stage: All partners to the Nordic Rare Disease Summit
10.20
–
10.25
Introduction to program
Line Friis Frederiksen, moderator, 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
Pernille Weiss, Member of European Parliament, Denmark
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10.55
–
12.00
RARE DISEASES
–
SETTING THE SCENE FOR CHANGE
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10.55
–
11.05
From roadmap to reality: Outcomes and actions since the first Summit
Video followed by interview with Birthe Byskov Holm, Chair, Rare Diseases
Denmark and Yann Le Cam, CEO EURORDIS
–
Rare Diseases EUROPE
11.05
–
11.45
Equal opportunities for people with rare diseases: How do we go from
“what” to “how”?
Panel discussion involving:
Avril Daly, President of EURORDIS
–
Rare Diseases EUROPE
 SUU, Alm.del - 2022-23 (2. samling) - Bilag 82: Invitation til Nordic Rare Disease Summit 2023.
Professor Anna Wedell, MD, Director of Precision Medicine Center, Karolinska
Satu Wedenoja, Chief Physician, THL
–
The Finnish Institute for Health Welfare
x, Member of the Health Care Committee of the Parliament, Denmark (TBC)
Bård Hoksrud, Member of Parliament, Spokesperson for Health, Former
Minister for Agriculture, Norway
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11.45
–
12.30
LUNCH
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12.30
–
13.30
EARLY DIAGNOSIS, PATIENT EMPOWERMENT, ACCESS TO INNOVATION
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DRIVING CHANGE THROUGH BEST PRACTICES
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12.30
–
12.45
Early Diagnosis (Partnership Screen4care
–
An innovative research approach
to accelerate rare disease diagnosis, based on genetic newborn screening
and digital technologies)
Speaker TBD
Patient Empowerment
–
The value of bringing in the patient perspective
when forming a national strategy for rare disease
Speaker from Danish Health Authority - TBC
13.00
–
13.30
Clearing the path for innovation/Leading
the way for patients’ access to
innovation
Key note speech by Adam Hutchings, CEO DOLON
followed by panel debate
Yann Le Cam, CEO EURORDIS
–
Rare Diseases EUROPE
Ludovic Helfgott, Executive Vice President, Rare Diseases, Novo Nordisk
Jørn Schultz-Boysen, Vice President, HAE Scandinavia ,
Niklas Hedberg, Chief Pharmacist TLV, Sweden, Chair EUnetHTA Executive
Board
Lars Ehlers, CEO, Nordic Institute for Health Economics
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13.40
–
16.00
BREAKOUT SESSIONS
12.45
–
13.00
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Breakout sessions will constitute of three parallel streaks
–
Early diagnosis, Patient Empowerment and
Access to innovation.
Each break out session will be opened with a brief keynote speech, followed by a discussion between three
panelists. Delegates will be invited to pose questions.
The delegates will reflect on these questions:
 SUU, Alm.del - 2022-23 (2. samling) - Bilag 82: Invitation til Nordic Rare Disease Summit 2023.
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What measurable changes do we want to see in this area?
What concrete actions do we need to take?
Who assumes ownership of what in the desired change?
To maximize the outcome for all delegates, it will be possible to attend each of the breakout sessions either
physically at the venue or virtually
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16.00
–
16.45
CLOSING SESSION
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16.00
–
16.15
Key take aways from Breakout sessions
Short interview of break out session moderators:
Anna Nehrgård, Rud Pedersen
Hans Winberg, Secretary General Leading Healthcare (TBC)
Adam Hutchings, CEO DOLON
16.15
–
16.45
Next steps & ownership for change
Dialogue with the Nordic Network for Rare Diseases under the Nordic Council
of Ministers
Anders Olauson, Founder of Ågrenska, Nordic Network for Rare Diseases
Karen Ellemann, Secretary General of the Nordic Council of Ministers - TBC
Tone Wilhelmsen Trøen, Chair of the Norwegian health and welfare
committee, Deputy chairman of
Nordic council of ministers’ health and
welfare committee
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16.45
END OF PROGRAM
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NORDIC RARE DISEASE SUMMIT 2023 PARTNERS
Nordic Rare Disease Summit 2023 is organized and financed by Takeda Pharma with contribution from
Alexion AstraZeneca Rare Disease, Novo Nordisk and Sobi.
C-ANPROM/SE/RDG/0027 nov-22