A conference titled “Rare Diseases from a Scientific Perspective” was held in collaboration with Üsküdar University’s Health, Culture and Sports Department (SKS) and the Rare Diseases Club (ÜÜRARE), within the scope of February 28 Rare Diseases Day. During the event, important topics such as rare diseases, orphan drugs, biotechnological approaches, social life, and legal rights were discussed, while emphasizing the struggles of individuals with rare diseases and the importance of social awareness.
The conference was held at Üsküdar University’s Central Campus Nermin Tarhan Conference Hall.
The event was attended by Rector Advisor and Head of Internal Medical Sciences Department, Faculty of Medicine, Prof. Dr. Tayfun Uzbay, Rector Advisor Prof. Dr. Muhsin Konuk, TRGENMER Director Dr. Lecturer Cihan Taştan, Co-Founder of Turkey Rare Cancers Platform Dr. Hilal Polat, Attorney Şenay Önal, PAHSSc Association President Meltem Ak, Neşe Kıran diagnosed with Retinitis Pigmentosa, Beyda Bayezit diagnosed with Autoimmune Hepatitis, Çağlar Özyiğit diagnosed with Duchenne Muscular Dystrophy, along with academicians, students, and club members.
Prof. Dr. Tayfun Uzbay: “Orphan drugs are vitally important for individuals with rare diseases”
Rector Advisor Prof. Dr. Tayfun Uzbay delivered the opening speech of the conference with the title “Rare Diseases and Orphan Drugs.”
Emphasizing that orphan drugs play a critical role in the treatment of rare diseases, Uzbay said; “Although these drugs are difficult to develop commercially, they are of great importance in improving the quality of life for individuals with rare diseases and offering them hope. We will seek answers to questions like ‘How rare are rare diseases really? How orphan are orphan drugs?’ We aim to raise awareness and develop solutions by discussing the problems in this area.”
Society's perspective on diseases was discussed
Co-Founder of Turkey Rare Cancers Platform Dr. Hilal Polat, in her speech titled “Rare Cancers in Life,” evaluated the challenges faced by individuals diagnosed with rare cancers in social life and society's perspective on these diseases.
Emphasis on science and technology
TRGENMER Director Dr. Lecturer Cihan Taştan, in his presentation titled “Biotechnological Approach in Rare Diseases,” explained the impact of science and technology in the diagnosis and treatment of rare diseases.
Legal processes discussed
Within the scope of the event, Attorney Şenay Önal delivered her speech titled “Legal Access Routes to Medicines.” Önal provided information about the legal barriers faced by individuals living with rare diseases in accessing treatment and potential solutions in this area.
“The Word is on Rare”
In the final section of the event, a panel titled “The Word is on Rare” was held, moderated by Rector Advisor Prof. Dr. Muhsin Konuk. PAHSSc Association President Meltem Ak, Neşe Kıran diagnosed with Retinitis Pigmentosa, Beyda Bayezit diagnosed with Autoimmune Hepatitis, and Çağlar Özyiğit diagnosed with Duchenne Muscular Dystrophy, shared the challenges of struggling with rare diseases and emphasized the importance of social awareness.
Selin Beyda Bayezit shared her struggle with autoimmune hepatitis and what this process brought her; Neşe Kıran emphasized the difficulties she faced during her vision loss and the importance of awareness. Meltem Ak shared her own experiences, while Çağlar Özyiğit stated that individuals with rare diseases should have greater visibility in society.
The conference concluded with the presentation of flowers to the participants and a group photo.