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 firstname.lastname@example.org.
To report concerns about your participation in the registry, you may contact Kiran Murty, Principal Investigator of the registry, at PI.email@example.com.
To inquire about your rights as a participant in the registry, you may also contact Hummingbird IRB: firstname.lastname@example.org.
If you are a researcher, and are interested in using the FD/MAS Patient Registry to advance research, please visit www.fdmasregistry.org/home/researchers, and then contact PI.email@example.com.
Visit the National Organization for Rare Disorders home page at rarediseases.org.