Today is International OCNDS Awareness Day. On April 5, 2016, lives were changed forever. On this day, 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. Soon these 5 children would be joined by others around the world.
Behind every rare disease diagnosis there is a family with big dreams and hopes. Someone once said that "Nothing about Rare Disease is simple - not the diagnosis, not the daily care, not the long term." OCNDS takes a toll on families financially, emotionally, spiritually and mentally.
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. To date, with your generosity and support, we have committed over $400,000 to life-changing OCNDS research.
Today, we ask you to Stand with Us on this journey.
Today, Stand With Us by watching this video about individuals living with OCNDS
Today, Stand With Us by using your voice and sharing this video with your friends and family.
Today, Stand With Us by donating to OCNDS research.
Thank you for supporting awareness with ACTION.