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


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 and the website Terms and Conditions on the Registration page.


To request a copy of the Informed Consent please email


An Institutional Review Board, for the purpose of protecting your rights, has reviewed this Registry. An institutional review board is a group of people who are responsible for protecting the rights and welfare of people who participate in studies. For questions about your rights as a Study Participant in this Registry or to discuss other study related concerns or complaints with someone who is not part of this Registry team, you may contact North Star Review Board at 877-673-8439 (toll free) or

Visit the National Organization for Rare Disorders home page at