Rare Diseases Affect 5 Million People in Turkey

Approximately 8 thousand rare diseases have been identified worldwide to date, and new ones are added every year. Approximately 70 percent of identified diseases occur in childhood. Rare Diseases affect approximately 5 million people in Turkey.

Takeda allocates a significant portion of its $4,8 billion R&D budget each year to develop innovative drugs to address unmet needs in the field of rare diseases.

According to World Health Organization data, one in every 2 thousand people around the world has a rare disease. While each of these diseases, 80 percent of which are genetically inherited, has its own characteristics, different care and treatment methods are needed.

Takeda Pharmaceuticals, one of whose focus areas is rare genetic diseases, aims to improve the quality of life of patients with the innovative treatments it develops. Takeda Türkiye General Manager Ömür Mangaloğlu; “Early diagnosis is very important in rare diseases. Although the average time to make a correct diagnosis is 4-5 years, in some cases this period can exceed ten years. While prolonged diagnosis time creates significant health inequalities for patients, the longer-than-average diagnostic process can lead to barriers to access to clinical care. The “Rare Diseases in Turkey” report, prepared for IQVIA by AIFD, of which we are a member, evaluates the current situation of rare diseases affecting more than 5 million people in the country. The report offers 19 recommendations on national policy, infrastructure and R&D, focusing on improving the diagnosis and treatment processes of rare diseases. "As Takeda Turkey, we aim to continue a comprehensive strategy and encourage cooperation in the fight against rare diseases with this report, in which we want to contribute to the national action plan published by our Ministry of Health in 2022," he said.

Mangaloğlu stated that they also support global initiatives in line with Takeda's vision of "A healthier and brighter future for everyone", in line with the aim of addressing health inequalities in rare diseases and eliminating the obstacles faced by the community with rare diseases. We have also demonstrated our commitment to our health equity strategy by signing the “Global Health Equity Network, Zero Health Gaps Commitment.” We were among the supporters of the article “Improving Equal Access to Rare Disease Diagnosis and Treatment Worldwide” published in the International Journal of Environmental Research and Public Health in March 2023. However, as a supporter of the University of Washington's metachromatic leukodystrophy (MLD) newborn screening program in the United States, we aim to help expedite diagnosis before signs become symptomatic in children,” he said.