“Rare Diseases Summit” by ÜÜRARE

At the summit organized by the Üsküdar University Rare Diseases Club, scientists, health professionals, and individuals living with rare diseases came together and raised awareness.

The “Science and Awareness in Rare Diseases Conference,” organized by the Üsküdar University Rare Diseases Club (ÜÜRARE) in collaboration with Faromder, was held on March 11, 2026, at the Nermin Tarhan Conference Hall. At the well-attended event, scientists, health professionals, and individuals living with rare diseases came together on the same platform to share knowledge and experiences.

At the summit, attended by approximately 236 students, it was emphasized that rare diseases are not just a matter of medical data but also encompass powerful struggles for life and personal stories. The talks given throughout the event both raised scientific awareness and highlighted the importance of social sensitivity.

Prof. Dr. Serdar Uğurlu, Prof. Dr. Kenan Barut, and Prof. Dr. Korkut Ulucan, who took part in the program as speakers, shared comprehensive information on the diagnostic processes and genetic dimensions of rare diseases and on current scientific research. The talks focused in particular on early diagnosis, a multidisciplinary approach, and the importance of scientific research.

One of the highlights of the event was the sharing of experiences by individuals living with rare diseases. Aynur Yıldırım and Hamza Karatana, who lives with Dandy-Walker Syndrome, shared their journeys and the importance of public awareness with participants. These real-life stories left a strong impression on the students, while once again demonstrating the importance of empathy and a human-centered approach in health care.

At the event, Nurse Dilşen Çevirgen also offered insights into patient care processes and the importance of multidisciplinary health services. Participants had the opportunity to better appreciate that rare diseases are a multidimensional process affecting not only individuals but also their families and social circles.

The phrase “Some people learn life by running, some by walking, and some by never stopping,” voiced during the conference, was one of the event’s most striking messages. This statement powerfully reflected the struggle for life and the resilience of individuals living with rare diseases.

At the summit, which continued interactively with a Q&A session, students had the opportunity to ask the experts questions about rare diseases, genetic processes, and health services.

The “Rare Diseases Summit,” held by ÜÜRARE, was one of the remarkable events where scientific knowledge met public awareness, offering students significant academic and human benefits.