Rare diseases come in many forms, but they all share one common problem: healthcare providers often lack the expertise to diagnose and treat them effectively.
With so few patients affected by each condition, accessing specialized care is often difficult. So, how can we ensure that these patients get the high-quality treatment they need?
The Nordic solution: Cross-border collaboration
Nordic Health Talks aims to explore how systematic collaboration between the Nordic countries can improve care for rare disease patients. By sharing health data, treatment protocols, and screening programs, the Nordic countries can set a new standard for managing rare diseases and improve outcomes for all patients.
We need to find better ways to share health data across the Nordic borders. A rare disease affects small populations and data sharing can be crucial in order to diagnose the diseases.
What can we learn from each other when it comes to implementing screening, for those diseases that benefit from early treatment in order to stop or slow down the development of an illness, in the national screening programs?
Allan M. Lund is a Professor of Paediatrics and Head of the Center for Inherited Metabolic Diseases at Copenhagen University Hospital, Rigshospitalet. He is a leading expert in rare metabolic diseases, overseeing diagnosis and treatment at the national level and advising Danish health authorities on neonatal screening and rare disease policy.
As chair of the Committee for Clinical Genetics and Screening and the Committee for MS/MS-Screening, Allan plays a key role in expanding newborn screening for inborn errors of metabolism (IEM). His extensive research and clinical work contribute to improving early detection and treatment strategies, making health data and cross-border collaboration crucial to his mission. He has also been involved in multiple EU-funded projects on rare diseases and was awarded the Rare Disease Award 2020 from Rare Diseases Denmark for his contributions to the field.
A Norwegian politician representing the Progress Party (Fremskrittspartiet). He has been a member of the Norwegian Parliament (Stortinget) since 2005, representing Telemark. He is currently a member of the Standing Committee on Health and Care Services in Parliament.
Guri Wevelstad is the mother of Saga, a 4-year-old girl with a rare condition. She is an advocate for her daughter's care and development, working closely with medical professionals and the staff at Saga's kindergarten. Guri is also a board member of Løvemammaene, a diagnosis-independent organization with about 7,000 members that supports parents of children with serious and often life-shortening diagnoses.
Development Manager at the Finnish Institute for Health and Welfare (THL), Services Unit, specializing in the national coordination of rare diseases in Finland. He represents Finland in the Nordic Network of Rare Diseases (NNRD) under the Nordic Council of Ministers and currently serves as Chair of the NNRD during Finland’s 2025 presidency.
Jørgen Schøler Kristensen is a hematologist and specialist in internal medicine with extensive experience in healthcare leadership, prioritization, and the use of health data. He has played a key role in the Danish Medicines Council, where he has been a part of the chairmanship since its establishment, working to assess and recommend new treatments at a national level.
Throughout his career, Jørgen has been committed to strengthening the use of health data in clinical decision-making, including the development of national registries for hospital medicine and treatment follow-up. His work supports data-driven approaches to rare diseases and personalized medicine, both in Denmark and across Europe.
Malene Fischer is the Director of Research at Rigshospitalet, overseeing research, innovation, and education. She is also a Professor at the Institute of Clinical Medicine at the University of Copenhagen and an Honorary Senior Lecturer at the School of Biomedical Engineering and Sciences, King’s College London.
With her involvement in the Nordic University Hospital Alliance (NUHA), Malene actively contributes to strengthening Nordic collaboration on healthcare challenges, particularly in the use and management of health data for research and clinical purposes. Her work plays a key role in advancing data-driven solutions for rare diseases across the Nordic region.
Nard Schreurs is a prominent figure in the Norwegian e-health sector. He is currently the CEO of EHiN (E-Health in Norway), which organizes one of the largest e-health conferences in Europe. With over 20 years of experience in digital healthcare, Schreurs has held various influential positions including Director of eHealth and Smart Tech at IKT-Norge.
Head of the Department of Newborn Screening at the Pediatric and Adolescent Clinic at Oslo University Hospital (OUS) and Co-leader of the Partnership for Rare Diseases. He has been instrumental in developing one of the most comprehensive newborn screening programs in Europe.
Oskar Ahlberg is a prominent figure in the field of rare diseases in Sweden. He serves as a member of the Board of Directors for Rare Diseases Sweden and is also the President of the Swedish MPS Association.
Leader of the National Advisory Unit for Rare disorders (NKSD). He has extensive experience working with rare diseases, having served as a senior adviser in the Norwegian Directorate of Health's department for rehabilitation and rare conditions. In his role, Aksnes works to improve access to updated knowledge and ensure equal healthcare services for people with rare disorders in Norway.
Norwegian politician from the Conservative Party who has served as a member of the Storting (Norwegian Parliament) for Akershus since 2013. She currently leads the Standing Committee on Health and Care Services and is a member of the Nordic Council.
Senior Ministerial Adviser for Medical Affairsat the Ministry of Social Affairs and Health, Department for Clients and Services in Healthcare and Social Welfare. He plays a key role in the development of new screening initiatives within the ministry and actively participates in the expert working group for the national coordination of rare diseases in Finland.
