Contact Us

Sponsor

The EHE Foundation
1561 Hopi Court, Hobart, WI, 54313 USA
www.fightehe.org

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Registry Contact

Denise Robinson
[email protected]
1-877-460-4240

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IRB

North Star Review Board
https://learningirb.org/
[email protected]

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 [email protected].

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Newsletter

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