US HAEA Scientific Registry

Research for a Cure

Sign up and be a volunteer in our patient driven research for a cure.

The greater the numbers of members, the greater our chances of success.

Got any questions?

Contact Registry Administrator
Anna Chenoweth


By US mail:
US HAEA Scientific Registry
PO Box 471532
Chicago, IL 60647

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    What is the US HAEA Scientific Registry?

    The US HAEA is committed to finding a cure for Hereditary Angioedema and to improving the lives of those affected by HAE. The Registry was also established by the HAEA to encourage and support ground-breaking HAE research. 

    Get more details about the Scientific Registry

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    Providing Samples and Data

    The goal of the Registry is to drive novel research in angioedema, including the study of HAE genetics, increasing the understanding of the disease and, ultimately, finding a cure.

    Go into details about criteria for participation

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    Online Registration

    Signing up as volunteer is easy.  Your participation is key to future medical research that will change lives – yours, those of your loved ones and everyone whose lives are affected by HAE.

    Sign up here

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    Registry FAQ

    We have collected some questions and answers about the Scientific Registry.

    If you have any additional questions, the Scientific Registry Administrator will be glad to help you. Please contact the US HAEA Scientific Registry by email at or by phone: 866-798-5598.

    Take me to the FAQ

Research Proposals

The US HAEA receives numerous requests each calendar year from researchers who ask for access to the data and samples gathered by the Scientific Registry.

Researchers may submit a research proposal to  which will be reviewed by the US HAEA Medical Advisory Board (MAB).  The MAB will then provide its recommendations to the HAEA, based on relevance and potential value of any proposal submitted.  Researchers will receive a response to their submission following the next earliest quarterly MAB meeting.



Jump to our sections with comprehensive content and learn more


What is HAE

Get to know the disease: symptoms, diagnose, treatments and more

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For healthcare providers. Knowledge, CME-programs and more

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Living with HAE

Care takers and givers: HAE will affect your life - But you can still be in control.

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Our area with a lot of usefull information

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