On May 29, 2024, at the Cultural Center R Hall of the Sıhhiye Campus, Hacettepe University Center for Genomics and Rare Diseases (HUGEN), Hacettepe University Center For Stem Cell Research and Development (PEDi-STEM), and Rare Diseases Federation collaborated to organize the Hand in Hand for Rare Diseases meeting.
The meeting began with opening speeches by Prof. Dr. Fatih Özaltın, Director of HUGEN and Prof. Dr. Mehmet Cahit Güran, Rector of Hacettepe University. Following the opening speeches, sessions on "Current Situation and Overview of Rare Diseases", "Rare Diseases and Public Health", "Registry Systems for Rare Diseases" and "Coordination Between Stakeholders and Awareness in Rare Diseases" were held, featuring speakers from Hacettepe University's Faculty Members, the Ministry of Health, the United Nations Children's Fund (UNICEF), the World Health Organization (WHO) and the Rare Diseases Federation. During the sessions, speeches were made on key topics such as the current status of rare diseases in Turkey and globally, the importance of patient registry systems, challenges faced by patients in accessing diagnosis, follow-up and treatment, as well as potential solutions. Additionally, the speeches covered the efforts and expectations of patient associations in this field and the need to raise awareness about rare diseases in society. Speakers emphasized the significance of stakeholders coming together and collaborating, highlighting the importance of maintaining existing partnerships and establishing new ones through this meeting. The meeting concluded with a video presentation prepared by patients struggling with rare diseases, aiming to amplify their voices and raise awareness.