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On 9 July 2026, the first regional Rare Disease Community Meeting took place in Panevėžys, bringing together patients of all ages living with rare diseases, their families, healthcare professionals, researchers, and many local residents interested in the topic in one shared space.
The patient organization Rare Diseases and the Lithuanian Population and Rare Diseases Biobank are launching a series of regional meetings with local communities across Lithuania. The first meeting, to be held in Panevėžys on 9 July, invites people living with rare diseases, their family members, and healthcare professionals. The event is organized in partnership with the Rare Diseases Coordination Centre of Vilnius University Hospital Santaros Klinikos.
The Lithuanian Population and Rare Disorders Biobank, marking its first anniversary, has reached an important milestone - more than 30,000 biological samples have been collected. These were derived from blood donated by over a thousand residents of the country. Another thousand people have already registered to become biobank participants in the near future.
The Director of the Lithuanian Population and Rare Disease Biobank, Dr. Giedrė Kvedaravičienė, has been appointed as Lithuania's representative to SiDnet – a COST Action network dedicated to advancing science diplomacy as a tool for addressing global geopolitical challenges through international scientific collaboration.
Artificial intelligence models will be developed in Lithuania to assess an individual’s risk of developing Alport syndrome based on national health data. Alport syndrome is a hereditary kidney disease that can lead to kidney failure as well as vision and hearing impairment. It is one of approximately 8,000 currently known rare but highly complex diseases, the Lithuanian Population and Rare Diseases Biobank announced on the eve of International Rare Disease Day, observed on Saturday. New opportunities for improving rare disease diagnostics will also be provided by the population-based biobank established last year.
Lithuanian biobanks, by joining forces, can make a significant contribution to the management of pandemics and chronic diseases. The forum highlighted that the national biobank infrastructure provides researchers with access to essential health data and biological samples. According to scientists, progress in modern medical science is impossible without biobanks.
The Lithuanian Population and Rare Diseases Biobank established by Vilnius University Faculty of Medicine welcomed a famous Lithuanian couple as participants – music artist Justinas Jarutis and his fiancée, VU MF general surgery resident Urtė Andriuškevičiūtė.
The first Lithuanian Population and Rare Diseases Biobank has opened at Vilnius University Faculty of Medicine. All Lithuanian residents are invited to become participants.