TÜSEB Türkiye Maternity, Child and Adolescent Health Institute and Herdem Çare Association’s Visit to IBG
As the Izmir Biomedicine and Genome Center (IBG) and the RareBoost project team, we hosted representatives from TÜSEB Türkiye Maternity, Child and Adolescent Health Institute (TAÇESE) and Herdem Çare Association on June 23, 2026. The visit was attended by TAÇESE President Prof. Dr. Şirin Güven, TAÇESE administrative staff member Özlem Köksal, and Dr. Ayşegül Altınbaş, a faculty member at Altınbaş University and the Chairperson of the Board of Directors of Herdem Çare Association, which provides support to patients and families, encourages research, and conducts awareness campaigns regarding TBL1XR1-related rare neurodevelopmental disorders, along with Herdem Çare Association Board Member Prof. Dr. Tunç Fışgın.
The program included research conducted at IBG in the field of rare diseases, diagnostic processes, and innovative treatment approaches. IBG Director Prof. Dr. Ali Osman Kılıç initiated the program by a welcome speech. Next, Prof. Dr. Şirin Güven informed the participants about TAÇESE’s activities and priority areas of work. Prof. Dr. Mehmet İnan introduced IBG’s research infrastructure, scientific activities, and international collaborations, while Prof. Dr. Uğur Özbek shared the work carried out within the scope of the RareBoost Project and the Rare Undiagnosed Diseases Platform. The presentation addressed genomic research, data sharing, and multi-stakeholder collaboration aimed at accelerating the diagnosis processes of rare and undiagnosed diseases.
In the “Innovative Treatments and Approaches” session held within the program, Dr. Sibel Kalyoncu Uzunlar, Dr. Gülçin Çakan Akdoğan, Assoc. Prof. Dr. Kasım Diril, and Dr. Tuğçe Batur shared current research and developing treatment strategies for genetic and rare diseases.
In the afternoon, guests had the opportunity to learn more about the work carried out at the center during a tour of the IBG laboratories and infrastructure. The visit provided an important platform for strengthening dialogue among research institutions, public organizations, academics, and patient associations working in the field of rare diseases, and for evaluating potential future collaborative projects.