The first meeting will take place on 9 July at Panevėžys Republican Hospital. The event programme and registration information are available here: https://retosligos.lt/renginiai/panevezys-2026/
Although rare diseases affect thousands of families in Lithuania, the journey to diagnosis often takes many years. For many people living with rare diseases and their families, new diagnostic methods, innovative treatments, and advances in medical science are not simply additional opportunities—they are often essential for obtaining an accurate diagnosis in time, receiving appropriate treatment, and achieving a better quality of life.
For this reason, increasing attention is being devoted in Lithuania to rare disease diagnostics, genetic testing, artificial intelligence solutions, and advances in medical research. However, progress in the field of rare diseases is impossible without the active involvement of patients, their families, and patient organizations. Within the rare disease community, meaningful change is created together with patients by strengthening their representation, involvement in decision-making, and collaboration with healthcare professionals, researchers, policymakers, and non-governmental organizations.
To bring the latest knowledge, opportunities, and expert support closer to people and healthcare professionals working in the regions, a series of regional meetings is being launched across Lithuania. The aim of these meetings is to strengthen collaboration among patients, family members, patient organizations, physicians, researchers, and other organizations involved in the field of rare diseases. Only by working together can we accelerate progress in rare disease diagnosis, treatment, and patient care.
Who Should Attend?
We invite:
- People living with rare diseases;
- Family members and caregivers;
- Individuals who are still seeking a diagnosis;
- Representatives of patient organizations;
- Family physicians, medical specialists, and other healthcare professionals;
- Anyone interested in rare disease diagnosis, treatment, and advances in medical science in Lithuania.
Why Attend?
The Panevėžys meeting will feature:
- Danas Čeilitka, Founder and Director of the patient organization Rare Diseases;
- Dr Giedrė Kvedaravičienė, Director of the Lithuanian Population and Rare Diseases Biobank at the Faculty of Medicine, Vilnius University;
- Prof. Rimantė Čerkauskienė, Coordinator of the Rare Diseases Coordination Centre at Vilnius University Hospital Santaros Klinikos, the event’s partner organization in Panevėžys.
This is an opportunity to meet rare disease experts in person, ask questions, learn about the latest developments in diagnosis and treatment, and discuss the everyday challenges faced by both patients and healthcare professionals. It is also an opportunity to contribute to a dialogue that strengthens patient communities, promotes interdisciplinary collaboration, and helps develop solutions needed to advance rare disease care in Lithuania.
Participants will also have the opportunity to become contributors to the Lithuanian Population and Rare Diseases Biobank and personally support the advancement of medical science. Together with new technologies, scientific research, and active public participation, the population biobank opens new possibilities for faster diagnosis of rare diseases, more effective treatments, and the development of personalized medicine.
We warmly invite you to join us!
