Contact Us

The Cute Syndrome Foundation Global SCN8A Survey Series

Contact Us


The Cute Syndrome Foundation
PO Box 842, Ozark MO, 65721

Registry Contact

Shelley Frappier


North Star Review Board

An Institutional Review Board, for the purpose of protecting 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 the EHE Global Patient Registry team, you may contact North Star Review Board at 877-673-8439 (toll free) or

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