Contact

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 registry@fibrousdysplasia.org.

 

To report concerns about your participation in the registry, you may contact Catherine Fairchild, Principal Investigator of the registry, at PI.registry@fibrousdysplasia.org.

 

To inquire about your rights as a participant in the registry, you may also contact Dana Marvel at Chesapeake IRB: adviser@chesapeakeirb.com.

 

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.registry@fibrousdysplasia.org.

 

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

Visit the National Organization for Rare Disorders home page at rarediseases.org.