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Privacy Policy
Advance HAE Privacy Policy
Thank you for entrusting Advance HAE with information on how you live with HAE. You join your fellow patients in the nationwide movement that is driving HAE research. Together, we can Advance HAE!

The US Hereditary Angioedema Association ("us", "we", or "our") operates Advance HAE (the "Site", "App"). We greatly value your privacy, including your personal information and content that you store with us. We collect and store your information only with your consent; we only collect the minimum amount of information necessary to provide the services to you of Advance HAE. We never sell your information to third parties. This page informs you of our policies regarding the collection, use and disclosure of Personal Information we receive from users of Advance HAE.

We use your Personal Information only for providing and improving the services of Advance HAE. By using the Site, you agree to the collection and use of information in accordance with this policy.

Information Collection And Use

In order to maximize the benefits of Advance HAE, while using our Site, we may ask you to provide us with certain personally identifiable information that can be used to contact or provide personalized services unique to you, as an individual user. Personally identifiable information may include, but is not limited to your name ("Personal Information"), email, and attack reports.

Please note: Advance HAE will remove your name and any other identifying information before providing any aggregate data to HAE researchers or, if necessary, to the FDA or its agencies. If you are a member of the US HAEA Scientific Registry or the Pharming Safety Registry, only Advance HAE Registry staff will be able to link your assigned ID number with your name.

Log Data

Like many site operators, we collect information that your browser sends whenever you visit Advance HAE ("Log Data").

This Log Data may include information such as your computer's Internet Protocol ("IP") address, browser type, browser version, the pages of our Site that you visit, the time and date of your visit, the time spent on those pages and other statistics.

In addition, we may use third party services such as Google Analytics that collect, monitor and analyze this data (de-identified and only in aggregate) to improve our services to you.

Do Not Track

Advance AHE does not track users over time and across third party web sites to provide targeted advertising and therefore does not respond to Do Not Track (DNT) signals.

Content Eraser Law

This law details the rights of minors as outlined by California legislation. If you are a minor (under 18), you can request to have your Advance HAE information or content anonymized.

The Eraser Law does not require Advance HAE to permanently delete your information from our servers or systems. The information simply must just be not visible or identifiable to the public or anyone viewing or using the online platform or mobile app.

If you wish to withdraw altogether from membership in the Scientific Registry or Pharming Safety Registry, please contact us as registry@haea.org.


We may use your Personal Information to contact you with newsletters or with service updates.

On rare occasions when it is necessary to do s, for instance, if our Service is temporarily suspended for maintenance, we might send you an email.

Generally, you may not opt-out of these communications, which are not promotional in nature. If you do not wish to receive them, you have the option to deactivate your account.

If you would like to request changes to how you are contacted, please email us at registry@haea.org.


Cookies are files with a small amount of data, which may include an anonymous unique identifier. Cookies are sent to your browser and stored on your computer's hard drive.

Like many sites, we use "cookies" to collect information. You can instruct your browser to refuse all cookies or to indicate when a cookie is being sent. However, if you do not accept cookies, you may not be able to use some portions of Advance HAE.


The security of your Personal Information is important to us, but remember that no method of transmission over the Internet, or method of electronic storage, is 100% secure. While we strive to use all available means to protect your Personal Information, we cannot guarantee its absolute security.

Changes To This Privacy Policy

This Privacy Policy is effective as of January 31st 2018, and will remain in effect except with respect to any changes in its provisions in the future, which will be in effect immediately after being posted on this page.

We reserve the right to update or change our Privacy Policy at any time and you should check this Privacy Policy periodically. Your continued use of the Service after we post any modifications to the Privacy Policy on this page will constitute your acknowledgment of the modifications and your consent to abide and be bound by the modified Privacy Policy.

If we make any material changes to this Privacy Policy, we will notify you either through the email address you have provided us, or by placing a prominent notice on our online platform and app.

Contact Us

If you have any questions about this Privacy Policy, please contact us at registry@haea.org.

Last updated: 31 Jan 2018