Why did we choose April 5th for our annual awareness day? On April 5, 2016, 5 years ago, the first paper was published describing a brand new syndrome called Okur-Chung Neurodevelopmental Syndrome, also known as OCNDS. Initially, there were 5 children identified in the paper with OCNDS. Families searching for years finally had an answer, a diagnosis for the symptoms that plagued their loved one. Today, more than 160 individuals have been diagnosed with OCNDS.
Currently, when someone receives an OCNDS diagnosis they are told there is no treatment or cure. This is changing. OCNDS families are not only taking a seat at the table, providing real-life perspectives that are helping to shape the development of new treatments and therapies, they are the DRIVING FORCE behind OCNDS rare disease research.
Someone once said that “Nothing about Rare Disease is simple – not the diagnosis, not the daily care, not the long term.” On April 5th, we ask you to Stand with Us on this journey. To Stand with Us, wear green or blue and tag us in your photos.