- Because HAE is a rare disease with a very small number of patients, a high percentage of the community must participate in order to establish a sufficient amount of data to ensure scientific validity.
- The Registry is a confidential database created to obtain uniform, long-term, complete and accurate information.
- All samples and data submitted to the HAEA are strictly protected to ensure your privacy.
Contact Registry Administrator
(866) 798 - 5598
US HAEA Scientific Registry
PO Box 471532
Chicago, IL 60647
"Join The Drive" so researchers can resolve the remaining scientific mysteries and accelerate the advancement of future therapies. Together, we can Advance HAE.
Tell us about yourself.
Complete a simple on-line form to tell us about yourself and your HAE.
Give us permission to collect your blood sample and data.
After you fill out the online survey, we will ask you to fill out an online consent form that requests your permission to collect and use your medical records, past history, attack reports, and blood sample. You will receive a blood sample donation Kit directly from the Scientific Registry in order to facilitate your blood sample donation. Detailed instructions on how to proceed with your sample donation will accompany the Kit and a postage-paid return envelope is included for your convenience.
Discover with us.
We are excited that you have decided to join this patient driven movement. Once you've registered, you'll have access to the Scientific Registry online portal so that you can submit your attack reports on a regular basis. The portal is your own personalized gateway to the Registry. Here you can submit forms which provide HAE researchers with vital information, and also track changes in your health over time.