If you have any questions about the registration process or about participation in the registry, please contact the Fibrous Dysplasia and McCune Albright Syndrome Patient Registry at


To report concerns about your participation in the registry, you may contact Kiran Murty, Principal Investigator of the registry, at


To inquire about your rights as a participant in the registry, you may also contact Hummingbird IRB:


If you are a researcher, and are interested in using the FD/MAS Patient Registry to advance research, please visit, and then contact


For reference, you can access a copy of the Informed Consent by clicking here, and the website Terms and Conditions by clicking here

Visit the National Organization for Rare Disorders home page at