Contact Us

Sponsor

The Cute Syndrome Foundation
PO Box 842, Ozark MO, 65721
https://www.thecutesyndrome.com/

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Registry Contact

Shelley Frappier
surveysupport@thecutesyndrome.com
905-683-0141

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IRB

North Star Review Board
https://learningirb.org/
info@northstarreviewboard.org

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 info@northstarreviewboard.org.

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Social Media

The Cute Syndrome Facebook
The Cute Syndrome Instagram
The Cute Syndrome LinkedIn

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