Ankara University and Sanofi signed a cooperation agreement for the Rare Diseases Application and Research Center (NADİR). According to a statement from Sanofi, rare diseases currently affect 350 million people worldwide and 5 million people in Turkey. Since 80 percent of rare diseases stem from genetic causes and diagnosis is difficult to establish, it can take patients 7 years to reach a correct diagnosis, and they may need to visit doctors from different specialties. Additionally, delays in rare disease patients reaching the right centers and insufficient technical and laboratory services required for diagnosis create difficulties in the diagnostic process and prolong it. Ankara University and Sanofi's Specialty Care Business Unit decided to combine their efforts at the end of 2001, signed a letter of intent, and began preliminary work. Following completion of necessary preparations and preliminary work, the protocol signed today officially launches the collaboration. Through the cooperation between Ankara University and Sanofi, NADİR—established to improve diagnosis, treatment, and follow-up quality for patients by conducting research on modern diagnostic and treatment methods for rare diseases—will strengthen its scientific activities. Within the scope of the cooperation, at the center named NADİR allocated for these studies on Ankara University's Cebeci campus, faculty members will be guided to conduct scientific research, generate data, and develop new technologies.  

'Rare diseases are among the most discussed and most pressing topics'

Ankara University Rector Prof. Dr. Necdet Ünüvar, whose views were included in the statement, said that rare diseases are among the most discussed and most pressing topics. He continued as follows: 'Its impact is not only medical; there are social, societal, and economic dimensions, future-oriented risks, and all of these are matters that need to be managed. We have established a center to work on all these issues. We have developed a good cooperation with Sanofi on this matter. I believe our objectives are aligned. I firmly believe that every step taken here and every result achieved will satisfy both parties. It will truly be a center that makes a serious impact on society. We plan to conduct very important work for the future at this center.' Pelin Yunusoğlu, General Manager of Sanofi Specialty Care Turkey, Levant and Iran, also announced that as a company, they are committed globally to increasing awareness of rare diseases and improving diagnosis and treatment journeys. Yunusoğlu noted that patients with rare diseases face difficulties and delays in reaching the right centers and accessing the necessary technical and laboratory services for diagnosis.   Yunusoğlu also stated that unnecessary tests and treatments undertaken due to misdiagnosis and delayed diagnosis create a significant financial burden on the health system, and continued as follows: 'It is to contribute precisely at this point that we have launched this cooperation, and we can support the scientific work of Ankara University's Rare Diseases Application and Research Center with our scientific focus and experience in the field of rare diseases—which is very meaningful and gratifying for us. Our preliminary preparations have been ongoing for some time. Today, with our signatures, we are embarking on a three-year joint work. We will work diligently to ensure this cooperation leads to successful projects in the field of rare diseases.'