The Gdańsk Medical University, in collaboration with the Rare Diseases Center at the University Clinical Center and the Rare Diseases Uniqius Foundation, organized the conference “Choroby rzadkie – razem możemy więcej” (Rare Diseases – Together We Can Do More). The event gathered medical experts, researchers, and patient organization representatives to improve the quality of life for people living with rare diseases and their families.The conference opened with speeches by Agnieszka Zimmermann and Jolanta Wierzba, highlighting the importance of interdisciplinary cooperation and the role of reference centers in building a cohesive healthcare system. Michał Hoffmann also welcomed participants.Expert presentations covered topics such as biobanks in rare disease diagnostics (Karolina Śledzińska, Elżbieta Stankiewicz), planned screening for Fabry and Gaucher diseases (Joanna Jagłowska), patient integration in clinical research and European collaboration (Hanna Preus), strengthening patient organization competencies (Maja Bartoszewicz-Moritz), and current EU health legislation (Tomasz Grybek).A dedicated patient organization panel, moderated by Aleksandra Sobieska-Listewnik, featured participation from associations supporting patients with 22q11 deletion syndrome, Fragile X, Addison’s disease, Williams syndrome, myopathies, and other rare conditions.Workshops on leadership in patient organizations (Agnieszka Trawicka) and collaboration between parents and educational, therapeutic, and care facilities (Joanna Doroszuk) emphasized practical strategies for sustainable support.The conference, held January 9–10, 2026, confirmed that effective care for rare diseases requires close cooperation between medical professionals, researchers, and patient organizations, with shared experiences fostering the development of systemic solutions.
Source:Gdańsk Medical University
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