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Nordic Rare Disease Summit

Sjældne Diagnoser


Takeda is proud to host the first ever Nordic Rare Disease Summit in the afternoon, 12th and 13th of April 2021.

Together with our co-host, Rare Diseases Denmark (Sjældne Diagnoser) we set out on a common aspiration to elevate rare diseases as a national health priority in the Nordic countries.

The Rare Disease Summit will evolve around three themes: Diagnostic Delay, Patient Empowerment and Patients Access to Innovative Treatment.


Key note speakers and panelists include:

  • HRH Crown Princess Mary, Patron of Rare Diseases Denmark
  • Terkel Andersen, President of EURORDIS – Rare Diseases Europe, Brussels, Belgium
  • Yann Le Cam, Chief Executive Officer, EURORDIS - Rare Diseases Europe; Brussels, Belgium
  • Gregory Moore, Co-Chair Global Commission, Corporate Vice President, Microsoft Health, USA
  • Bertel Haarder, MP, President of Nordic Council 2021 and former Minister for Health, Denmark
  • Pasi Nevalainen, Head of Rare Diseases Unit, Senior consultant at Tampere University Hospital, Finland
  • Lina Nordquist, Healthcare Spokesperson, MP, (The Liberal Party) Sweden
  • Arvid Heiberg, Prof. (em) Department of Medical genetics, Oslo University hospital, Norway
  • 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

For more information about the Nordic Rare Disease Summit 2021, including the possibility for participation, please contact Charlotte Engel Møller, Senior Coordinator, Takeda Denmark:

Note: Health Care Professionals from Danish hospitals need to contact their own management if they would like to participate.



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 932 rare disease patient organizations in 73 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).




The following organizations have endorsed the Nordic Rare Disease Summit: