The Road Ahead
Advance HAE Scientific Registry
Research for a Cure
  • 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.
Have questions?
Contact Registry Administrator
Janet Long


Janet
janetlong@haea.org

(866) 798 - 5598

US HAEA Scientific Registry
10560 Main St. Suite PS40
Fairfax City, VA. 22030


Researchers can resolve the remaining scientific mysteries of Hereditary Angioedema and accelerate the advancement of future therapies. Together, we can Advance HAE

Step 1.
Tell us about yourself.
Complete a simple on-line registration form to tell us about yourself and your HAE.

Step 2.
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.

Step 3.
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.

Step 4.
Download the NEW Advance HAE mobile app.
The new Advance HAE app makes it easier for you to help drive HAE research. Now you can enter and monitor your reports from virtually any place. You can also have your digital diary available in the palm of your hand. Join the drive to resolve the remaining scientific mysteries of HAE and accelerate the advancement of future therapies. Help Advance HAE! The NEW app features include:

 •A quick and simple new way to enter your HAE Attack Reports
 •Fast and convenient reporting via your own electronic device
 •Easier access to review and enter your Attack Reports
 •Customized health statistics just for you, generated by your submitted Reports
 •Personalized health record with graphics illustrating your own HAE attack history

Download the new Advance HAE mobile app TODAY through your APP STORE!


Scientific Registry