The prevalence of CNC is unknow. The number of 750 documented cases worldwide has not changed since 2015.
Despite research being done on Carney Complex (CNC) for the past 35 years a large majority of medical professionals still have never even heard of CNC.
Thanks to the many patients that took part in the research protocols for CNC headed by Dr. Constantine Stratakis and his team at the NIH, over the years they were able to understand correlations in other diseases such as Acromegaly and Cushing’s syndrome better.
There is still a lot to be done for Carney Complex. We have been incredibly lucky to have had people like Dr. Carney and Dr. Stratakis, and others dedicate so much time and effort into our disease without a Patient Organisation backing them. Today research is being backed and driven by Patient Organisations for the specific illness. They contribute to finding funds and are at the forefront of deciding what research should be done alongside with medical professionals and researcher.
People affected by Carney Complex, their loved-ones, and supporters:
it’s time to finally take that extra step forward and start becoming an active part in supporting those that want to help us find a cure for our disease.
If you want to help spread awareness please consider liking and following the Carney Complex Awareness Page on fb. The more people you share the posts with, the more people we can potentially reach.