If you have any questions about the registration process or about participation in the Registry:

Please contact the registry administrator at or by phone at (888) 322-5487.


To inquire about rights as a participant in the registry, please contact the IRB for this study at:

An Institutional Review Board, for purpose of protecting your rights, has reviewed this Study.  An institutional review board is a group of people who are responsible for protecting the rights and welfare of people who participate in studies.  

Visit the National Organization for Rare Disorders home page at