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) was 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).
The Nordic Rare Disease Summit 2021 took place on April 12., 13.00 – 17.00 and April 13., 13.00 – 16.00 2021 (CET) as a virtual event (free of charge) with more than 400 participants.
Themes and participants
Nordic Rare Disease Summit evolved around three themes: Diagnostic Delay, Patient Empowerment and Patients Access to Innovative Treatment. The summit gathered more than 400 participants including national and regional institutions, international organizations, patient associations, health care professionals, academics to foundations, NGOs, pharmaceutical companies and media.
Visit the meeting report here>>
Watch recording of Summit day 1 here>>
Watch recording of Summit day 2 here>>
Results
As a result of the Summit, a Nordic Roadmap for Rare Diseases was introduced. The ambition of the Roadmap is to provide a framework for elevating rare diseases as a health priority in all Nordic Countries.
Find the Nordic Roadmap for Rare Diseases here>>
A number of materials and reports were produced as basis for the summit, including a report from Dolan on An Assessment of Alignment of P&R Systems with ORPH-VAL Principles in the Nordics.
Find more material from the Nordic Rare Disease Summit 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).
Visit the Memorandum of Understanding between Takeda Pharma and Rare Diseases Denmark here>>