Contact Us

PNH Patient Registry

Contact Us

Sponsor

Aplastic Anemia and MDS International Foundation (AAMDSIF)
401 N. Washington Street, Suite 430
Rockville, MD 20850
https://www.aamds.org/
pnhregistry@aamds.org
(800) 747-2820

Registry Contact

iamrare-help@rarediseases.org
(800) 747-2820

IRB

North Star Review Board
https://learningirb.org/
info@northstarreviewboard.org
1-877-673-8439

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 PNH Patient Registry team, you may contact North Star Review Board at 877-673-8439 (toll free) or info@northstarreviewboard.org.

Social Media & Newsletter

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