Contact Us
Ectodermal Dysplasias Registry
Sponsor
6 Executive Dr., Ste. 2
Fairview Heights, IL 62208-1360
www.nfed.org
Registry Contact Person
Mary Fete
registry@nfed.org
618-566-6872
Institutional Review Board (IRB)
North Star Review Board
https://learningirb.org/
info@northstarreviewboard.org
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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 North Star Review Board at info@northstarreviewboard.org.
Visit the National Organization for Rare Disorders home page at rarediseases.org.