By Sulaiman, Okur-chung neurodevelopmental syndrome, United Arab Emirates, March 17, 2021
Okur-chung neurodevelopmental syndrome is a rare disease that was diagnosed less than a year ago. She was 7 years old and was born with a clefts palate of the throat and had four different operations so far, including in the ear and teeth, she suffers from severe developmental delay and learning difficulties. The most dangerous thing is high temperature Her body at night and also suffers from sleep apnea attacks, and this happens less recently. She suffers from problems in the digestive system, brain and nerves. We try to be active in social media to define her disease and rare diseases in general, hoping that this category will receive the attention it deserves.