Rare Disease Day 2025 in Brno: Hope, Research, and the Active Role of Patients

Rare Disease Day 2025 in Brno: Hope, Research, and the Active Role of Patients

Rare diseases affect millions of people worldwide, and on February 28, we recognize their impact as part of Rare Disease Day. In Brno, we addressed this important topic on Monday, February 24, in a place deeply connected to genetics and scientific progress – the Mendel Greenhouse.

The main topic of this year's gathering was newborn screening and its crucial role in early diagnosis and treatment. Advances in genetic diagnostics are enabling an increasing number of patients to find answers to their health challenges, a key step in identifying appropriate therapies. However, treatment options for rare diseases are often limited, making research and clinical studies essential for developing new therapeutic approaches and ensuring their safety and efficacy.

How Does CREATIC Help?

At the CREATIC Centre of Excellence, we focus on supporting patients with rare diseases through research and innovative treatment methods. In addition to offering modern cell and gene therapies for certain rare conditions, our activities include identifying available clinical trials and facilitating patient participation—sometimes enabling patients to travel abroad for specialized treatment.

Clinical Studies and the Role of Patients

The importance of clinical trials and patient participation was also a key topic in the patient workshop held during the event. Discussions covered topics such as patient involvement in clinical studies and the impact of gene and cell therapy research on the future of rare disease treatment.

Patient involvement in research is a crucial step toward personalized medicine, ensuring access to innovative treatments for those who need them most.

We extend our heartfelt thanks to everyone involved in organizing this event and to those contributing to improving the chances of effective treatment and a better quality of life for patients with rare diseases.