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Nordic Rare Disease Summit 2021


On 12th and 14th of April 2021 Takeda proudly hosted the first ever Nordic Rare Disease Summit.

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 Nordic Rare Disease Summit evolved around three themes: Diagnostic Delay, Patient Empowerment and Patients Access to Innovative Treatment.

The Summit was organized as a virtual meeting and gathered more than 480 people ranging from rare disease experts, decision- and policymakers as well as representatives from NGO’s, patient organizations, academia and industry from across the Nordic countries. All coming together to debate how to best overcome the special challenges characterizing the rare disease area.

A ‘Roadmap for Rare Diseases’ that summarizes key messages, discussions and new knowledge from the summit was presented at the end of the summit. This Roadmap will provide policy guidance relevant for the Nordic countries, recommendations for future co-operation and a shared call for action.

A recording of the two afternoons is available on this webpage (see list of materials).

Key note speakers and panelists included:

  • 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
  • Clifford Goldsmith, US Chief Medical Officer at Microsoft, 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, please contact Hans Lynggaard Jørgensen, Senior Manager, Public Affairs & Communications, Takeda Denmark:
[email protected]



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: