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:
For more information about the Nordic Rare Disease Summit 2021, please contact Hans Lynggaard Jørgensen, Senior Manager, Public Affairs & Communications, Takeda Denmark:
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: