Contact Us

Sponsor

Hermansky-Pudlak Syndrome, Inc. (HPS Network) in Collaboration with
the National Organization for Albinism and Hypopigmentation (NOAH)
One South Road, Oyster Bay, NY 11771
www.HPSnetwork.org

Registry Contact

Donna Appell, RN
databank@hpsnetwork.org
1-516-922-4022 or 1-800-789-9477

IRB

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

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.

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