Since Bohring-Opitz is so rare there is limited information available on causes, progression, or treatment options. Even rarer is information on the quality of life of patients and their families. To focus research and support more directly on patient and family needs, BOS Foundation and CoRDS have partnered together to create a patient registry. Our objective is to collect information that will contribute to the research process, hoping to learn things that will advance current treatment options or contribute to the options available for future patients and their families. Stay tuned for more information about this registry over the next days. For questions or comments please email us at firstname.lastname@example.org.