There are no known treatments for OCNDS but there is hope because the time is now. Science is catching up and we are funding research that may treat, reverse and cure symptoms for those affected by OCNDS. With researchers like yourselves collaborating and working together, we have the chance to make a meaningful change in the lives of those with OCNDS. We believe collaboration begins with data-sharing. Data sharing enhances the quality of research and transparency. Rare Disease groups have very limited funds and our children have limited time, data sharing discourages duplication of effort in data collection. Data sharing also promotes diverse thinking. In order to find treatment or a cure we need to look at this syndrome from different angles and different specialities. We are committed to working with institutions and researchers that will share biospecimens, cell lines, animals models, and de-identified data.
There are OCNDS patient derived samples and de-identified genetic & phenotypic OCNDS data available to qualified researchers.