International Bloom Syndrome Registry (IBSR)

Sponsor

Bloom Syndrome Association 
3911 Cleveland Ave
SMB#33748
San Diego, CA 92103
https://www.bloomsyndromeassociation.org/

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Registry Contact Person

International Bloom Syndrome Registry Coordinator 
ibsr@bloomsyndromeassociation.org  
+1 (619) 492-9144

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North Star Review Board

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

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Social Media & Newsletter

Bloom Syndrome Community | Facebook 
Bloom Syndrome Community (bloomsyndrome) | Instagram  
Bloom Syndrome Association | LinkedIn  
Bloom Syndrome Association Newsletter  

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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 Review Board at info@northstarreviewboard.org. 

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