Nordic Rare Disease Summit

The first Nordic Rare Disease Summit

The first Nordic Rare Disease Summit took place on April 12. – 13. 2021 as a virtual event.  TAKEDA organized and funded the Summit with Rare Diseases Denmark (Sjældne Diagnoser) as co-host. Partners of the Summit was EURORDIS Rare Diseases Europe, SBONN Rare Diseases Nordic Network (Sällsynta brukarorganisationers Nordiska Nätverk) and LiF (The Danish Association of the Pharmaceutical Industry).

The first 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.

As a result of the summit 2021 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

The second Nordic Rare Disease Summit

The second Nordic Rare Disease Summit took place on April 17, 2023, in Stockholm and online. Like the first summit, the themes evolved around three main topics: Diagnostic Delay, Patient Empowerment, and Patients’ Access to Innovative Treatment.

The Summit 2023 served as an arena for knowledge sharing and dialogue between decision-makers and representatives from healthcare, patient organizations, authorities, academia, media, and life science companies.

The Summit was organized during the Swedish Presidency of the Council of the European Union.

Rare Diseases Denmark encouraged all patient representatives and other stakeholders with a sincere interest in living with a rare disease to participate – it was free of charge both online and on-site.

Find the invitation here

Find recordings from the Summit here

The third Nordic Rare Disease Summit

Organization and Code of Conduct

The first summit 2021 was 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

The second summit 2023 is organized in Stockholm and online on 17 April 2023 by the pharmaceutical company Takeda Pharma with contributions from Alexion AstraZeneca Rare Disease, Novo Nordisk, and Sobi. Additional partners are Rare Diseases Sweden, Lif – the research-based pharmaceutical industry in Sweden, EURORDIS – Rare Diseases Europe, SBONN – a network of six umbrella patient organizations for rare diseases in five Nordic countries, EUCOPE – The European Confederation of Pharmaceutical Entrepreneurs, and EFPIA – The European Federation of Pharmaceutical Industries and Associations.