'Rare Diseases from a Scientific Perspective' conference was held

In cooperation with Üsküdar University Health, Culture and Sports Department (HCS) and Rare Diseases Club (ÜÜRARE), a conference on "Rare Diseases from a Scientific Perspective" was held within the scope of February 28, Rare Diseases Day. At the event, important issues such as rare diseases, orphan drugs, biotechnological approaches, social life and legal rights were discussed, while the struggle of rare individuals and the importance of social awareness were emphasized.

 

The conference was held at Üsküdar University Main Campus Nermin Tarhan Conference Hall.

The event was attended by Advisor to the Rector and Head of the Department of Internal Medical Sciences of the Faculty of Medicine Prof. Tayfun Uzbay, Advisor to the Rector Prof. Muhsin Konuk, Director of TRGENMER Asst. Prof. Cihan Taştan, Co-Founder of the Turkish Rare Cancers Platform Dr. Hilal Polat, Atty. 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, academicians, students and club members.

Prof. Tayfun Uzbay: "Orphan drugs are of vital importance for rare individuals"

Advisor to the Rector Prof. Tayfun Uzbay delivered the opening speech of the conference with the title of "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 terms of improving the quality of life of rare individuals and giving them hope. How rare are rare diseases really? How much of an orphan are orphaned drugs?' We aim to raise awareness and develop solutions by discussing the problems in this area."

Society's perspective on diseases was discussed

In her speech titled "Rare Cancers in Life", Dr. Hilal Polat, Co-Founder of the Turkish Rare Cancers Platform, evaluated the difficulties faced by individuals diagnosed with rare cancer in social life and the society's perspective on these diseases.

Emphasis on science and technology

In his presentation titled "Biotechnological Approach in Rare Diseases", TRGENMER Director Asst. Prof. Cihan Taştan explained the impact of science and technology on the diagnosis and treatment of rare diseases.

Legal processes were discussed

Within the scope of the event, Atty. Şenay Önal delivered a speech titled "Legal Access Methods in Medicines". Önal gave information about the legal obstacles faced by individuals living with rare diseases in the process of accessing treatment and the solutions in this field.

"Söz Nadir’de"

In the last part of the event, a panel titled "Söz Nadir’de" (The Voice of the Rare) was held under the moderation of Prof. Muhsin Konuk, Advisor to the Rector. Meltem Ak, President of PAHSSc Association, Neşe Kiran diagnosed with Retinitis Pigmentosa, Beyda Bayezit diagnosed with Autoimmune Hepatitis and Çağlar Özyiğit diagnosed with Duchenne Muscular Dystrophy talked about the difficulties of combating rare diseases and the importance of social awareness.

Selin Beyda Bayezit shared her fight against autoimmune hepatitis and what this process added to her; Neşe Kiran emphasized the difficulties she faced in the process of vision loss and the importance of awareness. While Meltem Ak shared her own experiences, Çağlar Özyiğit stated that rare individuals should be more visible in society.

The conference ended with the presentation of flowers to the participants and a group photo shoot.

 

Üsküdar News Agency (ÜNA)