Sundheds- og Ældreudvalget 2019-20
SUU Alm.del Bilag 196
Offentligt
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NORDIC
RARE DISEASE
SUMMIT
2020
INVITATION
The challenges we are facing today within rare diseases are complex and
extensive. To understand and overcome these we need to work together and
share knowledge across countries, across expert groups and consult people
who are living with rare diseases.
The Nordic Rare Disease Summit will be an arena for knowledge sharing and facilitate dialogue
and discussions between clinicians, patient representatives and politicians.
At the summit you can meet leading experts within rare diseases from all Nordic countries,
who will present new findings, share best practice and participate in discussions on how to
elevate the area of rare diseases in order to support and empower people living with rare
diseases.
The Summit will result in a shared commitment and call for action in a ‘Copenhagen Roadmap
for Rare Diseases’, and throughout the day, you will have the opportunity to visit the Rare
Disease Arena, where a broad range of best-practice cases, insights and projects from all
Nordic countries, will be displayed by patient organisations and key actors within rare diseases.
The summit is organized by Takeda and hosted in collaboration with Rare Diseases Denmark
(Sjældne Diagnoser).
We hope to see you in Copenhagen!
Best Regards,
Ingeborg Rossebø Borgheim
Head of Nordics,
Takeda
Birthe Byskov Holm
President,
Rare Diseases Denmark
TIME AND PLACE
Date: March 13, 2020, 09.30-16.50
Place: Hangar 145, Vilhelm Lauritzens
Alle 1, 2770 Kastrup, Denmark
(Shuttlebuses will be provided from
Copenhagen Airport appx. 5 min drive)
QUESTIONS?
For more information please contact
Charlotte Engel Møller, Senior
Coordinator, Takeda Denmark:
[email protected]
PARTICIPATION
Free participation, registration
required! Register for the summit
HERE
Please RSVP by
Wednesday, February 26, 2020
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 SUU, Alm.del - 2019-20 - Bilag 196: Invitation til 'Nordic Rare Disease Summit' den 13. marts 2020
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AGENDA
09:30 - 10:00
REGISTRATION & LIGHT BREAKFAST
10:00 - 10:35
WELCOME
Giles Platford, President Europe and Canada Business Unit, Takeda and Birthe Byskov
Holm, Chair, Rare Diseases Denmark
Opening Address
(video) by HRH Crown Princess Mary, Patron of Rare Diseases
Denmark
10:35 - 12:10
THEME I: DIAGNOSTIC DELAY
Timely diagnosis and why it matters,
by Arvid Heiberg, Prof.
(em),
Department of
Medical genetics, Oslo University hospital, Norway
The Global Commission on how to End the Diagnostic Odyssey for Children with a
Rare Disease,
by Mathias Ekman, Director Industry Solutions Executive for Health
and Life Science at Microsoft, Western Europe
Innovative technologies and the future of diagnostics,
Helena Kääriäinen, Research
Professor, National Institute of Health and Welfare, Helsinki Finland
Panel debate: How to ensure early diagnosis in the Nordic countries?
Moderator: Arvid Heiberg, Prof.
(em),
Department of Medical genetics, Oslo
University hospital, Norway
Panelists: Maria Montefusco, Chair, Rare Diseases Sweden. Camilla Sønderby, Global
Head of Patient Value & Product Strategy, Takeda. Allan Meldgaard Lund, Chief
Physician, Center for Inherited Metabolic Diseases, Rigshospitalet
12:10 - 13:00
LUNCH & VISIT TO THE RARE DISEASE ARENA
13:00 - 14:35
THEME II: PATIENT EMPOWERMENT
The importance of empowerment for patients, relatives and society,
by
Terkel Andersen, President of EURORDIS
- Rare Diseases Europe
3 x 10-minute perspectives on empowerment:
•
Micro/Patient level:
Experiences of Web-based adaptation training for people with
rare diseases, Sinikka Hiekkala Project Mgr, The Finnish Association of People with
Physical Disabilities
•
Macro level:
Rare Diseases Helpline in a societal perspective, by Birthe Byskov Holm,
President, Rare Diseases Denmark, member of SBONN
•
Policy level:
Equal opportunities for People Living with Rare Disease, by Helene
Cederroth, Founder and President, Wilhelm Foundation
Panel debate: How do we facilitate and improve empowerment nationally and cross
country?
Panelists: Terkel Andersen, President, EURORDIS; Ingunn Westerheim, snr advisor, The
Norwegian Federation of Organisations of Disabled People, member of SBONN, Guðrún
Helga Harðardótti, Family Therapist and CEO, Einstök Börn, member of SBONN, Monica
Hedman, Patient representative, Rare Diseases Sweden
14:35 - 14:55
COFFEE BREAK
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14:55 - 16:30
THEME III: PATIENTS’ ACCESS TO INNOVATION
European recommendations for improving overall access to medicines for
patients with rare diseases across the EU,
by Yann Le Cam,
Chief Executive
Officer,
EURORDIS
- Rare Diseases Europe
How the Nordic countries align with nine European OPRH-VAL principles for
assessment of medicines for rare diseases,
by Lieven Annemans, Professor of
health economics, Ghent University, Member of ORPH-VAL Working Group
Access, Innovation and sustainability from a Norwegian perspective,
by Stig
Slørdahl, CEO at RHA Central Norway, and leader of the Decision Forum RHA
Panel debate: How can we improve patient’s access to innovation?
Moderator: Lieven Annemans, Professor of health economics, Ghent University,
Member of ORPH-VAL Working Group
Panelists: Yann le Cam, CEO, EURORDIS, Ida Sofie Jensen, CEO, The Danish
Association of the Pharmaceutical Industry (Lif), Karin Friis Bach, Chair of Health
Committee and Board Member, Danish Regions, Stig Slørdahl, CEO at RHA
Central Norway, and leader of the Decision Forum RHA, Giles Platford, President
Europe and Canada Business Unit, Takeda
16:30 - 16:50
COLLABORATING TO IMPROVE CONDITIONS FOR PEOPLE WITH RARE
DISEASES
Transition to ‘Rare Disease Arena’ booth area
Presentation of ‘Copenhagen Roadmap for Rare Diseases’
Learnings and key messages uniting participants in the Nordic Rare Disease
Summit behind common aspirations, by Birthe Byskov Holm, Chair, Rare Diseases
Denmark and Ingeborg Borgheim, Head of Nordics, Takeda
Opportunity to explore ‘Rare Disease Arena’
PARTNERS
Prominent organizations from across the Nordic countries and
the wider Europe have joined as partners:
EURORDIS, a non-governmental patient-driven alliance of patient
organizations representing 862 rare disease patient organizations
in 70 countries, SBONN, a network of six umbrella patient
organizations for rare diseases in five Nordic countries and The
Danish Association of the Pharmaceutical Industry (Lif).
SBONN
The following organizations have endorsed the Nordic Rare Disease Summit:
Code of Conduct
Both Takeda (funder and organizer) and Rare Diseases Denmark (co-host) stress that it is a precondition for the collaboration that all activities com-
ply with The Danish Association of the Pharmaceutical Industry (Lif), Swedish Association of the Pharmaceutical Industry - LIF and EFPIA’s Code of Practice on Relati-
onships between The Pharmaceutical Industry and Patient Organizations, national and EU regulations governing interactions between the pharmaceutical industry and
patient organizations and Rare Disease Denmark’s ethical guidelines. The event in its current form and content has been pre-approved by The Danish Ethical Committee
for the Pharmaceutical Industry (ENLI).
About Takeda
Takeda is a patient-focused, values-based, R&D-driven global biopharmaceutical company committed to bringing Better Health and a Brighter Future to
people worldwide. Our passion and pursuit of potentially life-changing treatments for patients are deeply rooted in over 230 years of distinguished history in Japan.
We have presence in approximately 80 countries, with leading positions in Japan and the U.S., respectively the third and first largest pharmaceutical markets in the
world. We will deliver highly innovative medicines and transformative care for more people globally. www.takeda.com
About Rare Diseases Denmark (Sjældne Diagnoser)
Rare Diseases Denmark is a national alliance of 56 rare disease societies. Rare Diseases Denmark’s work is based
on volunteers and a minor professional secretariat,
www.sjaeldnediagnoser.dk.
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