Lithuania is advancing discussions on a new National Rare Disease Plan aimed at addressing the challenges faced by patients with rare diseases and their families.
In Lithuania, ongoing discussions regarding the National Rare Disease Plan highlight the unique challenges faced by individuals afflicted with rare diseases. These often include lengthy diagnostic journeys, complex treatments, and a lack of coordinated information and support for patients and their families. As a significant number of people in society are affected by rare diseases, the proposed plan intends to tackle these issues systematically and comprehensively.
The National Plan is being developed by a health policy group approved by the Ministry of Health in collaboration with several key institutions, including Vilnius University Hospital Santaros Clinics, Lithuanian University of Health Sciences Hospital Kaunas Clinics, the Ministry of Health, the Lithuanian Research Council, and organizations representing patients. This multi-sectoral approach aims to combine clinical experience, scientific research, and health policy solutions to create a more effective support system for rare disease patients.
Vice Minister of Health LaimutÄ— VaidilienÄ— emphasized the importance of updating the original rare disease plan that was established in 2012, which has enabled significant advancements in the field. She underlined the need for the new document to better meet the expectations of patients and their families, signaling a commitment to ongoing improvements in the support and resources available for those living with rare diseases in Lithuania.
