Contact Us

Wolfram Syndrome Global Registry

Contact Us

Sponsor

Snow Foundation for Wolfram Syndrome Research
https://thesnowfoundation.org/
P.O. Box 50224 Clayton, MO 63105

Registry Contact

Pat Gibilisco
pat@thesnowfoundation.org
(402) 694-1354

IRB

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

Social Media

Wolfram Syndrome Global Patient Registry | Facebook
Wolfram Syndrome Global Patient Registry | Instagram
Wolfram Syndrome Global Patient Registry | Twitter
Wolfram Syndrome Global Patient Registry | Newsletter

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

Institutional Review Board (IRB)

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 IRB at info@northstarreviewboard.org.