Rare Disease Awareness

Rare Disease Awareness Novo Nordisk's Senior Director of Rare Disease Business Unit Pınar Dumlu made significant statements on disease awareness on 28 February Rare Disease Day. Dumlu highlighted that rare diseases affect more than 5 million people in Turkey, affecting 1 in every 16 people, and that individuals living with rare diseases have lower quality of life compared to those with other chronic diseases. The last day of February is recognised worldwide as Rare Disease Day to raise awareness about rare diseases, which affect approximately 350 million people globally. Drawing attention to the importance of this day, Novo Nordisk Rare Disease Business Unit Senior Director Pınar Dumlu made significant statements on disease awareness, while Novo Nordisk Clinical, Medical and Regulatory Senior Director Dr. Ömer Buğra Bahadır highlighted Novo Nordisk's work in this field.

Affecting more than 5 million people in Turkey

Pınar Dumlu, emphasising that rare diseases affect more than 30 million people in Europe and more than 5 million people in Turkey, affecting 1 in every 16 people, noted that there are approximately 7,000 different rare diseases and continued as follows: "During these challenging times for our country, ensuring that our life-saving treatments reach individuals living in the earthquake zone is our top priority. From the first day after the earthquake, we collaborated with competent institutions and organisations to ensure uninterrupted treatment for individuals living with rare bleeding disorders and supplied the necessary products to the region. Many rare diseases are chronic, lifelong, quality-of-life diminishing conditions that shorten human lifespan. While 72 per cent of these diseases are genetically inherited, 95 per cent cannot be treated. Particularly the lack of awareness from the moment of diagnosis and the lack of knowledge about treatment options can make the process much more difficult and uncertain."  

Quality of life lower for individuals with rare diseases

Dumlu stated, "86 per cent of individuals with rare diseases report anxiety, and 75 per cent report depression. Moreover, 1 in every 4 people waits 5 to 30 years for their disease to be diagnosed, while in children this delay can reach 6-8 years. The delay in diagnoses continues to increase disease burden." Stating that Novo Nordisk continues its work to increase disease awareness and treatment support in the field of lifelong rare diseases, Dumlu continued as follows: "We continue our operations for 40 years worldwide as a pioneering company in the field of rare diseases including haemophilia, growth disorders and hormone replacement therapies. So far, we have developed 14 different treatments that improve the lives of individuals living with rare diseases in over 100 countries. In Turkey, we have been providing treatments in the field of rare diseases for 22 years, and we continue our work to provide a better future for individuals living with rare diseases and to develop solutions that will change their lives by reducing the burden caused by the disease. With our strong legacy in this field, our experience, our work to make a difference with innovative treatments, and our projects aimed at meeting patient needs in addition to treatment, we are leading the way for change."