WELCOME TO THE NORDIC RARE DISEASE SUMMIT 2021

12-13 April 2021

Virtual conference

Background information

HOST

Takeda

CO-HOST

Rare Diseases Denmark

PARTNERS

Rare Diseases Europe The Danish Association of the Pharmaceutical Industry

ENDORSERS

European Federation of Pharmaceutical Industries and Associations European Confederation of Pharmaceutical Entrepreneurs AISBL The Danish Haemophilia Society The Danish Haemophilia Society

Nordic Rare Disease Summit

At the summit you can meet politicians, patient representatives and 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.

Themes for the summit are

Reduction of diagnostic delay
Empowerment of patients
Improvement of access to innovation

We hope you will join us for the virtual Nordic Rare Disease summit.

Program

If you have any questions or issues regarding registration for the summit please contract
Help Desk: +45 50 92 72 03 or +45 31 21 31 84

Please click on the picture for the speaker bio and speaker presentation.

Monday 12th of April: 12:45 – 17:00

12:45 – 13:00 Registration for virtual meeting Click on the picture for info
13:00 – 13:40 WELCOME
13:00 – 13:25 Giles Platford, President Europe and Canada Business Unit, Takeda and Birthe Byskov Holm, Chair, Rare Diseases Denmark Giles PlatfordBirthe Byskov Holm
13:25 – 13:35 Introduction to program by Moderator Line Friis Frederiksen, biologist, science journalist Line Friis Frederiksen
13:35 – 13:40 Opening Address by HRH Crown Princess Mary, Patron of Rare Diseases Denmark HRH Crown Princess Mary
13:40 – 15:10 THEME I: DIAGNOSTIC DELAY
13:40 – 13:55 Timely diagnosis and why it matters, by Arvid Heiberg, Prof. (em) Department of Medical genetics, Oslo University hospital, Norway Arvid Heiberg
13:55 – 14:10 The Global Commission on how to End the Diagnostic Odyssey for Children with a Rare Disease, by Clifford Goldsmith, US Chief Medical Officer at Microsoft, USA Clifford Goldsmith
14:10 – 14:25 Innovative technologies and the future of diagnostics by Helena Kääriäinen, Research Professor, National Institute of Health and Welfare, Helsinki Finland Helena Kääriäinen
14:25 – 15:10 Panel debate: How to ensure early diagnosis in the Nordic countries?
Moderator: Line Friis Frederiksen, biologist, science journalist
Panelists: Arvid Heiberg, Prof. (em) Department of Medical Genetics, Oslo University hospital, Norway, Allan Meldgaard Lund, Chief Physician, Center for Inherited Metabolic Diseases, Rigshospitalet, Denmark, Maria Montefusco, Chair, Rare Diseases Sweden and Hans Tómas Björnsson MD PhD, Associate prof., Faculty of Medicine, University of Iceland, Assistant prof. of pediatrics and genetics, Johns Hopkins School of Medicine, USA
Line Friis FrederiksenArvid HeibergMaria MontefuscoHans Tómas BjörnssonAllan Meldgaard Lund
15:10 – 15:30 BREAK
15:30 – 17:00 THEME II: PATIENT EMPOWERMENT
15:30 – 15:45 The importance of empowerment for patients, relatives and society, by Terkel Andersen, President of EURORDIS – Rare Diseases Europe Terkel Andersen
15:45 – 16:15 3 x 10-minute perspectives on empowerment:
  • Micro/Patientlevel: Experiences of web-based adaptation training for people with rare diseases, by Sinikka Hiekkala, Project Manager, The Finnish Association of People with Physical Disabilities
  • Macrolevel: Rare Diseases Helpline in asocietal perspective, by Birthe Byskov Holm, Chair, Rare Diseases Denmark, member of SBONN
  • Policy level: Equal opportunities for People Living with Rare Disease, by Helene Cederroth, Founder and President, Wilhelm Foundation, Sweden
Sinikka HiekkalaBirthe Byskov HolmHelene Cederroth
16:15 – 17:00 Panel debate: How do we facilitate and improve empowerment nationally and cross country?
Moderator: Line Friis Frederiksen, biologist, science journalist
Panelists: Terkel Andersen, President, EURORDIS; Andreas Habberstad, Project leader, The Norwegian Federation of Organisations of Disabled People (FFO), Guðrún Helga Harðardótti, Family Therapist and CEO, EinstökBörn, Iceland, member of SBONN and Stinus Lindgreen, MP, (the Danish Social- Liberal Party), Adnan Berberovic, Patient Representative, The Swedish Bleeding Disorder Society
Line Friis FrederiksenTerkel AndersenAndreas HabberstadGuðrún Helga HarðardóttiStinus LindgreenAdnan Berberovic
17:00 End of Day 1

Tuesday 13th of April: 12:45 – 16:00

12:45 – 13:00 Registration for virtual meeting Click on the picture for info
13:00 – 13:10 RECAP of DAY 1
Summary of key messages from Day 1 of the Nordic Rare Disease
Summit: Theme I: Diagnostic Delay and Theme II: Patient Empowerment,
by Moderator: Line Friis Frederiksen, biologist, science journalist
Line Friis Frederiksen
13:10 – 13:40 THEME III: PATIENTS’ ACCESS TO INNOVATION
13:10 – 13:25 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 Yann Le Cam
13:25 – 13:40 How the Nordic countries align with nine European ORPH-VAL principles for assessment of medicines for rare diseases, by Lieven Annemans, Professor of health economics, Ghent University, Belgium, Member of ORPH-VAL Working Group Lieven Annemans
13:40 – 13:55 Q&A with Yann Le Cam, Chief Executive Officer, EURORDIS - Rare Diseases Europe and Lieven Annemans, Professor of health economics, Ghent University, Member of ORPH-VAL Working Group
13:55 – 14:40 Panel debate: How can we improve patients’ access to innovation?
Moderator: Lieven Annemans, Professor of health economics, Ghent University, Belgium, Member of ORPH-VAL Working Group
Panelists: Yann Le Cam, CEO, EURORDIS, Ida Sofie Jensen, CEO, The Danish Association of the Pharmaceutical Industry (Lif), Lina Nordquist, Healthcare Spokesperson, MP, (The Liberal Party) Sweden and Giles Platford, President Europe and Canada Business Unit, Takeda
Lieven AnnemansYann Le CamIda Sofie JensenGiles PlatfordLina Nordquist
14:40 –16:00 COLLABORATING TO IMPROVE CONDITIONS FOR PEOPLE WITH RARE DISEASES
14:40 – 14:55 Nordic Roadmap for Rare Diseases by Birthe Byskov Holm, Chair, Rare Diseases Denmark Birthe Byskov Holm
14:55 – 15:10 Nordic Summit Address, From the first National Strategy to a Common Nordic Roadmap for Rare Diseases by Bertel Haarder, President of The Nordic Council, (MP) and former Minister of Health, Denmark Bertel Haarder
15:10– 15:25 BREAK
15:25– 16:00 Reflections on Nordic Roadmap for Rare Diseases and priorities for the future This session will gather key stakeholders from across the Nordic countries. From across the Nordic countries: Pasi Nevalainen, Head of Rare Diseases Unit, Senior consultant at Tampere University Hospital, Stinus Lindgreen, MP, (The Social-Liberal Party), Denmark, Nicklas Sandström, Politician (Moderate party), Member of board in Sjukvårdsdelegationen, Sweden, Arvid Heiberg, Prof. (em) Department of Medical genetics, Oslo University hospital, Norway Stinus LindgreenPasi NevalainenLine Friis FrederiksenNicklas SandströmArvid Heiberg
16:00 – 16:15 Wrap-up by Duarte Marchand, Head of Nordics, Takeda Duarte Marchand
16:15 End of Nordic Rare Disease Summit 2021