The Rare Disease Day is also commemorated by CZECRIN and the CREATIC
At the end of February, the World Rare Disease Day is celebrated globally, an opportunity to highlight diseases that occur only rarely but still require our attention. In this context, the Faculty of Medicine of Masaryk University organized a seminar open to all – the public, experts, and families affected. The co-organizer was the Faculty of Medicine MU’s center of excellence CREATIC, which develops and manufactures medicinal products for modern therapies for rare diseases.
On February 22, discussions on topics related to diagnosis, research, and the development of drugs for modern therapies took place in the premises of the Brno university campus. The program was full of lectures by renowned experts focused on diagnostics, treatment, and comprehensive care for patients with rare diseases. Key topics included multidisciplinary approaches in care, innovative diagnostic methods, specifics of patient support, and hereditary predispositions to cancer diseases.
Special attention was then captured by a workshop titled “Patient Engagement in Clinical Studies,” prepared by the Faculty of Medicine MU’s center of excellence CREATIC, thus successfully concluding this rare day. Dr. Lenka Součková, deputy of VVI CZECRIN and the European correspondent for the ECRIN network, presented to the participants the use of information from clinical study registries, and explained how direct patient participation in the design and implementation of clinical studies can be beneficial for both sides – scientists and patients. “This approach not only increases the relevance and efficiency of research but also supports transparency and trust between the research community and patient groups,” adds Dr. Součková.
The Rare Disease Day annually offers a unique opportunity for all parties involved to meet, share experiences, and the latest knowledge in the field of rare diseases. It is a key moment to strengthen cooperation among patients, healthcare professionals, and the scientific community, as well as to raise public awareness about these less known, but serious diseases.
