Unite against rare diseases!

The protocol signing ceremony was attended by Deputy Minister of Health Prof. Dr. Nurullah Okumuş, President of Turkish Health Institutes Prof. Dr. Ümit Kervan, Altınbaş University Rector Prof. Dr. Cemal İbiş, Acıbadem Mehmet Ali Aydınlar University Rector Prof. Dr. Ahmet Şahin, and Herdem Çare – TBL1XR1 Research and Support Association President Dr. Ayşegül Altınbaş.

Under the protocol signed with the Ministry of Health, the aim is to conduct R&D studies in the field of health sciences and technologies, particularly rare diseases, to support educational activities on both sides, to share knowledge and experience, and to carry out joint technical and scientific studies.

Prof. Dr. Okumuş: “If there is hope, we must not give up.”

Deputy Minister of Health Prof. Dr. Okumuş stated that the protocol would serve as an exemplary model of cooperation between the public sector, academia, and civil society. Okumuş said, "Rare diseases are not actually rare. We should look at them as a spectrum. There are many patients. It is important to join forces and cooperate not only in the field of TBL1XR1 but in all rare diseases. Rare diseases are a difficult, challenging field. The day will come when every disease will have a cure. If there is hope, we must continue without giving up," he said. Okumuş emphasized the importance of heel screening tests conducted by the Ministry of Health for children's health and said that healthcare personnel, academia, and civil society organizations must work together.

Dr. Ayşegül Altınbaş, President of Herdem Çare – TBL1XR1 Research and Support Association, shared her family's complex and uncertain 8.5-year diagnosis process; she highlighted the importance of raising awareness in the field of rare diseases and the active participation of patient communities in scientific studies.