7 THOUSAND RARE DISEASES AWAITING THERAPY
7 thousand rare diseases never been heard of are affecting our lives negatively. One in every 16 people in Turkey suffers from a rare disease, 80% of which are caused due to genetic inheritance. Patients often consult with a wide range of clinical practitioners over a period of years before receiving the appropriate information about their condition.
Asst. Prof. Dr. Osman Doluca, Lecturer, Department of Biomedical Engineering, Izmir University of Economics (IUE), pointed out to 7 thousand rare diseases unlike common diseases such as cardiovascular diseases, Alzheimer’s, and cancer. Doluca said, “Even though common diseases such as cancer, cardiovascular diseases continue to be in the spotlight of pharmaceutical companies, rare diseases started to arouse interest in terms of research support lately. 50% of patients suffering from these diseases are children. 30% of these children lose their lives before the age of 5 due to late diagnosis or lack of treatment. And one in every 16 people in Turkey suffers from a rare disease”.
“Rare Diseases Awareness Platform’
Asst. Prof. Dr. Doluca stated that there was an estimated 5 million people affected from rare diseases in Turkey, and that there were 350 million people with these diseases worldwide. Doluca, who said that correct diagnosis took more than 7 years, and people visited 8 different specialists on an average for a correct diagnosis, stated the following:
“Hundreds of rare diseases can now be diagnosed thanks to new techniques, biological tests. However, there is a lack of resources and information to address rare diseases. Patients need to be informed more during this process. We’ve established a Rare Diseases Awareness Platform in Turkey in order to create awareness about rare diseases and gather people who suffer from rare diseases, their loved ones, and scientists together. We aim to inform people about rare diseases via social media groups and short videos. We also would like to warn doctors about taking rare diseases into consideration when treating their patients, and recommend patients to share their concerns and suspicions on this topic with their doctors.”
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