Patient registry coming soon!

The collaboration between the BOS Foundation and CoRDS will create the first ever patient powered registry for patients and families living with Bohring-Opitz Syndrome! Any patient (or their caretaker) with a BOS diagnosis may participate. A patient registry is a collection of standardized information about a group of patients who share a condition or experience. The Foundation, with consultation from our Medical Advisors and members, will manage the type of data to be collected, future areas of research, and dissemination of the data. CoRDS will assist us with the creation of questionnaires and on-line tool. In addition they will store and manage all of the information at no cost to the Foundation or to patients. Stay tuned for more information about this registry over the next days. For questions or comments please email us at bohringopitz@gmail.com.