Contact

NORD Study Support

nordregistry@rarediseases.org

Institutional Review Board (IRB)

An Institutional Review Board, for the purpose of protecting your/the Study Participant’s 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 NEIRB, 197 1st Avenue, Suite 250, Needham, MA 02494 at 1-855-447-2123 (toll free).  Review and approval of this Registry by NEIRB is not an endorsement of this Registry or its outcome.

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