Nordic Rare Disease Summit gathers experts to discuss how the care of patients with rare health conditions can be improved - in Stockholm, April 17, 2023
For the second time, the Nordic Rare Disease Summit will bring together decision-makers, healthcare professionals, patient organisations, media, academia and life science companies to highlight rare health conditions as a priority area in the Nordic countries. The goal is to define a joint action plan on how the situation of the over 1 million* people in the Nordic region living with a rare health condition can be improved.
Among the key speakers at the meeting are Sweden's Minister of Health Acko Ankarberg Johansson, Chief Executive Officer at EURORDIS - Rare Diseases Europe, Yann Le Cam, and Professor of Medical Genetics and Chair of the Precision Medicine Center at Karolinska Institutet, Anna Wedell. The Nordic Rare Disease Summit 2023 will be held during the Swedish EU Presidency.
The first Nordic Rare Disease Summit was held in 2021 and brought together close to 500 decision-makers, experts and patient organizations in the field of rare health conditions. The conference, which was arranged by Takeda with the patient organisation Sjældne Diagnoser (Rare Disease Denmark) as co-organizer, resulted in a first joint Nordic action plan to strengthen the opportunities for patients with rare health conditions to receive better care and improved health.
"The Nordic Rare Disease Summit 2023, which takes place during the Swedish EU Presidency, provides an excellent opportunity to debate pharmaceutical legislation as well as regulations for orphan drugs and paediatrics. My hope is that the meeting will bring us closer to an integrated, patient-centred and needs-driven approach to rare health conditions not only in the Nordic region, but also at the European level,” says Yann Le Cam, Chief Executive Officer, EURORDIS - Rare Diseases Europe.
Nordic Rare Disease Summit 2023 is a platform for policy discussions where participants on April 17 can either attend on site in Stockholm or participate virtually. The focus will be on challenges and good examples in the field of rare health conditions in order to find solutions. The main opportunities lie in early diagnosis, increased access to innovation and increased influence for patients as experts.
Nordic Rare Disease Summit 2023 is organised and funded by Takeda Pharma with contributions from Alexion AstraZeneca Rare Disease, Novo Nordisk and Sobi. Additional partners are the Swedish Association for Rare Diseases Sweden, Lif– the researching pharmaceutical companies in Sweden, EURORDIS - Rare Diseases Europe, SBONN - a network of six umbrella organizations for rare health conditions in five Nordic countries, EUCOPE - The European Confederation of Pharmaceutical Entrepreneurs and EFPIA - The European Federation of Pharmaceutical Industries and Associations.
For more information about the Nordic Rare Disease Summit 2023, speakers, agenda and to RSVP, visit www.nrds2023.org
*Center for Rare Diagnoses (CSD), Karolinska University Laboratory
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