The Nordic Rare Disease Summit was planned for March 2020 – as the first of its kind. The Corona Pandemic led to the cancellation of so many important activities, including the summit.
However, the challenges of living with a rare disease remain massive and challenges may even have been reinforced by the Corona-situation. Takeda and Rare Diseases Denmark (Sjældne Diagnoser) is eager for the summit to take place with the ambition to elevate rare diseases as a national health priority in the Nordic countries – Takeda organizes and fund the summit with Rare Diseases Denmark as co-host. The ambition is shared by the partners of the summit – EURORDIS Rare Diseases Europe, SBONN Rare Diseases Nordic Network (Sällsynta brukarorganisationers Nordiska Nätverk) and LiF (The Danish Association of the Pharmaceutical Industry).
We are glad to announce, that Nordic Rare Disease Summit 2021 will take place in a virtual form on April 12., 13.00 – 17.00 and April 13., 13.00 – 16.00 2021 (CET) as a virtual event (free of charge).
Themes and participants
Nordic Rare Disease Summit will evolve around three themes: Diagnostic Delay, Patient Empowerment and Patients Access to Innovative Treatment. The summit will gather a broad range of participants including ministers for health from the Nordics, national and regional institutions, international organizations, patient associations, health care professionals, academics to foundations, NGOs, pharmaceutical companies and media.
Invitations will be circulated by Takeda early 2021. Follow this webpage to know more. Also, do follow SBONN on Facebook here>>
Organization and Code of Conduct
The summit is organized by Takeda and hosted in collaboration with Rare Diseases Denmark. 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 comply with The Danish Association of the Pharmaceutical Industry (Lif), Swedish Association of the Pharmaceutical Industry – LIF and EFPIA’s Code of Practice on Relationships 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 program will ahead of the event be submitted for pre-approval by The Danish Ethical Committee for the Pharmaceutical Industry (ENLI).