Privacy Policy

Scope of Privacy Policy

The Autoimmune Encephalitis Alliance (“AE Alliance” or “Alliance” or “we” “us” or “our”) is committed to responsible information handling practices. You can visit most pages on the Site (as defined below) without giving us any information about yourself, but sometimes we need personal information to provide information or services that you request. This Privacy Policy explains data collection and use in those situations.

This Privacy Policy applies to the “Site”: (and each sub-domain associated with this URL) and (AE Alliance community awareness event).

In order to fully understand your rights, we encourage you to read this Privacy Policy as well as our Terms Of Use. By using the Site, you explicitly accept, without limitation or qualification, our practices surrounding the collection, use, and sharing of personal information provided by you in the manner described in this Privacy Policy.  If you do not agree with the terms of this Privacy Policy, please do not access, browse, or use the Site.

Information We Collect

While you are visiting the Site, we may collect two types of information about you: “Personal Information” (such as name, email address, mailing address, phone, credit card or debit card, personal preferences and other account-related information) and “Aggregate Information” (such as information about how many users log on to the Sites on a daily basis).

Personal Information is collected online when you voluntarily submit non-public personal information on the Site by requesting information, providing a donation, signing up for our newsletter, and other similar activities.

Personal Information That You Provide to Us

We may obtain Personal Information about you ONLY if you elect to give us that information. Types of Personal Information may include the following:
Zip code
Telephone number
E-mail address
Age group
Credit card number and expiration date (for online donations)
Name of organization (where applicable)
Your connection to autoimmune encephalitis

Aggregate Information is non-personally identifiable/anonymous information about you, such as pages most frequently accessed by you, time spent on a page or area of the Site, the number of visits to the Site by you, types of browser used by you, cookie preferences or search terms entered by you. Aggregate Information is used in a collective manner, and no single person can be identified by that compiled information (for example, the number of people who logged into the Site on a particular day). Aggregate Information does not personally identify a specific individual.

Google Analytics is used to analyze traffic to our Site. Google Analytics does not maintain individual profiles for visitors, nor does Google Analytics collect data that might identify the individual visitor. Google Analytics only collects aggregate data.

If you use buttons on our website linked to social media or similar sites (for example “Like” and/or “Share” buttons), content from our website may be sent back to that other website and, depending on your privacy settings, may be privately or publicly visible (for example to friends, followers or generally to anyone who has access to your profile page) and may be used by those other sites for marketing or other purposes.


When you visit or access the Site, we send one or more cookies (small text files containing a string of characters) to your computer that uniquely identify your browser. We use cookies to improve the quality of the Site by storing user preferences and tracking user trends. Cookies also help us better serve you with more tailored information and facilitate your ongoing access to and use of the Site. Most web browsers accept cookies automatically but can be configured not to do so or to notify the user when a cookie is being sent. If you wish to disable cookies, refer to your browser help menu to learn how to disable cookies. Please note that if you disable cookies, you may not be able to use some customized features on the Site.

How we use Personal Information

The AE Alliance uses personal information collected from the Site, such as names and e-mail addresses, to respond to your questions or inquiries, to process donations, to help organize community awareness events, and to inform our community aboutnew programs and services.

We may contact you from time to time to ask you if you would be interested in sharing personal experiences you may have had in relation to autoimmune encephalitis, or to provide comments on the work that we do. We would explain in further communications with you how that information would be used, and we treat all such accounts which our supporters share with sensitivity and care.

We will only use your information where we have obtained appropriate permissions from you and will only use the information in accordance with this Policy, or where it is required and authorized by law.

 Keeping your records

We keep records for as long as required to operate the service in accordance with legal, tax and accounting requirements. Where your information is no longer required, we will ensure it is disposed of in a secure manner and, where required by applicable law we will notify you when such information has been disposed of.

Personal Information We Share

The AE Alliance does not sell, rent, trade or otherwise share personal information collected through our Site except as described below:

We may share personal information with our subsidiaries and affiliates as reasonably necessary for our internal administrative and business purposes.

We work with third parties that provide services on our behalf. Such services may include website hosting, marketing, IT services, data analysis, and email delivery services. We may share personal information with these third parties for the purpose of enabling them to provide such services.

If you make a donation on our site, we may share personal information with a third party to process payments on our behalf. However, such third parties are obligated to maintain the confidentiality of Personal Information and are not authorized to use Personal Information for any other purpose. The AE Alliance is not responsible for the conduct of any third party who processes payment on our behalf and we disclaim all liability for damages of any kind arising out of the action or inaction of such third party.

From time to time, we may be required to provide Personal Information or Aggregate Information in response to a valid court order, subpoena, government investigation, or as otherwise required by law, or if we reasonably believe that you have committed unlawful acts or acts that may endanger the health or safety of another user or the general public. We also reserve the right to report to law enforcement agencies any activities that we, in good faith, believe to be unlawful. We may release certain personal information when we believe that such release is reasonably necessary to protect the rights, property, and safety of others and ourselves.

We also reserve the right to share, assign or transfer your Personal information to any of our affiliates or any successor in interest to our organization by merger, reorganization, or operation of law.

Your Choices

You can always choose whether or not to provide information through the Site. However, if you choose not to disclose certain information, your access to certain portions of the Site may be limited.

Opt Out Policy

In order to provide service to you, we will occasionally send you communications related to your transactions, security or the administration of our website. We may also wish to send you our newsletter or other organizational communications.

If you do not wish to receive communications from our team, please send an email to [email protected]  Please include your full name and email address in the email. You may also click on the unsubscribe link provided on each email and follow the instructions.

Information Storage and Security

We employ reasonable security precautions to protect personal information about you. The Site is operated from a secure environment with integrated security measures to help protect against the loss, misuse, and alteration of personal information provided through the Site.

However, no method of transmitting or storing data is completely secure. As a result, although we strive to protect personal information about you, we cannot guarantee the security of any information you transmit to us through or in connection with the Site. If you have reason to believe that personal information is no longer secure, please notify us immediately by contacting us in accordance with the last section below.

Note About Children

The Site is neither designed nor intended to attract children under the age of 13, and we do not collect personal information from any individual who we actually know is under the age of 13. We ask that children under the age of 13 not submit any personal information to us

External Links

The Site contains links to various websites that the AE Alliance does not control. When you click on one of these links, you will no longer be transacting business through our Site. Third party websites maintain their own privacy policies, and we do not exercise any control over any of the third party websites that may be linked to our Site. If you visit a website that is linked to our Site, you should consult that website’s privacy policy before providing any personal information. Please be aware that we are not responsible for the privacy practices of such other websites, and we are not liable for their misuse of personal information about you.

International Use

The owner of the Site is based in the State of North Carolina in the United States. Access to the Site may not be legal by certain persons or in certain countries. If you access the Site from outside the United States, you do so on your own initiative and are responsible for compliance with local laws. If you are located outside the United States and you contact us or provide information through the Site, please be advised that any information you provide to us will be transferred to the United States, and that by submitting information, you explicitly authorize such transfer.

Terms of UseNotices and Revisions

If you choose to visit the AE Alliance site, your visit and any dispute over privacy is subject to this Privacy Policy and our Terms of Use, including limitations on damages, arbitration of, and application of law of the state of North Carolina. We reserve the right to change our Privacy Policy and our Terms of Use at any time. We reserve the right, at our sole discretion, to change, modify, add, or delete portions of this Privacy Policy at any time without further notice. If we do this, we will post the changes to this Privacy Policy on this page and will indicate at the top of this page the date these terms were last revised, which shall constitute reasonable notice of such changes.

Your continued use of the Service or the Sites after any such changes constitutes your acceptance of the new Privacy Policy. If you do not agree to abide by these or any future Privacy Policy, do not use or access (or continue to use or access) the Service or the Sites. It is your responsibility to regularly check the Sites to determine if there have been changes to these Privacy Policy and to review such changes.

Reviewing, Correcting and Removing Your Personal Information

You have the following data protection rights:

  • You can request access, correction, updates or deletion of your personal information.
  • You can object to processing of your personal information, ask us to restrict processing of your personal information or request portability of your personal information.
  • If we have collected and processed your personal information with your consent, then you can withdraw this consent at any time. Withdrawing your consent will not affect the lawfulness of any processing we conducted prior to your withdrawal, nor will it affect processing of your personal information conducted in reliance on lawful processing grounds other than consent.
  • You have the right to complain to a data protection authority about our collection and use of your personal information.

To exercise any of these rights please contact us. We will respond to your request to change, correct, or delete your information within a reasonable timeframe and notify you of the action we have taken.

Questions Regarding the AE Alliance Privacy Policy

If you have any questions about the Privacy Policy, please contact us at:

Autoimmune Encephalitis Alliance
2530 Meridian Parkway, Suite 300
Durham, NC 27713,
Attn: Privacy Policy
Or email us: [email protected]

This Privacy Policy was updated on June 25, 2018