Epilepsy Leadership Council Website Privacy Policy 

Introduction

The American Epilepsy Society is the administrative home of the Epilepsy Leadership Council.

The American Epilepsy Society is committed to protecting your privacy. This Privacy Policy describes how AES/ELC collects, uses, and shares your information when you use and interact with our Services and applies to all persons who use our Services (“Users”). Our Privacy Policy governs your access to and use of all AES operated and controlled websites including https://www.epilepsyleadershipcouncil.org (the “Website”), all other publicly available online services controlled or provided by AES (collectively, the “Services”).

If you have questions about AES’s Privacy Policy or practices, or if you need to contact us about the information we collect about you, our contact information is at the end of this Privacy Policy.

Applicability and Eligibility

Applicability

This Privacy Policy applies only to the Services, and AES’s collection, use, disclosure, and protection of your data. It does not apply to third-party websites, applications, or services.

Before accessing, using, or interacting with the Services you should carefully review the terms and conditions of this Privacy Policy.

Eligibility to Use the Services

The Services are not directed to children under the age of 16. You may not use the Services if you are under the age of 16.

Information Collection and Use

AES collects data about you and your use of the Services through various means, including when you provide information to us such as when you join, donate, register for events and webinars, submit an application or proposal, and when we automatically collect information about you when you access, use, or interact with the Services. We use this information for a variety of reasons, including to improve the Services and to tailor the Services to you.

AES processes Personal Data collected through the Services on the lawful basis of legitimate interests to provide the Services to you. Such processing is necessary for the purposes of the legitimate interests pursued by AES or by our Service Providers related to the Services.

The types of information AES may collect about you include:

Information You Provide to Us

AES Membership and Event Information: AES collects certain Personal Data from you when you join AES or register for AES events. “Personal Data” refers to information about you that may be used to identify you, such as your first name, last name, title, employer/organization, email address, phone number, and mailing address . AES uses this information to provide your membership, register you for events, provide information about memberships and events, and administer your registrations with AES.

AES Account Information: AES may require you to register for an account (an “AES Account”) in order to use certain Services . We do not require you to register to view content on our website. However, if you do register for an AES Account, you will gain access to those areas and features of the Services that require registration. AES will collect certain information about you in connection with your registration for your AES Account, which may include Personal Data and other information such as a username, password, personal profile, pictures, your location, and information about your contacts. Some of your AES Account information may be displayed publicly. You are not required to provide your Personal Data; however, if you choose to withhold certain Personal Data, we may not be able to provide you with certain Services. You may update your preferences, including what data is publicly visible and what communications you receive from AES, by logging into your account at https://my.aesnet.org/.

Payment Transaction Information: We may collect and store information related to purchases and donations made through the Services. You may provide certain information to complete payments via the Services, including your credit or debit card number, card expiration date, CVV code, and billing address (collectively, “Payment Information”), along with your name and billing, delivery and shipping address, to complete payment transactions through certain Services.

Please note AES works with Service Providers (as defined below) to handle payment transactions. AES does not itself collect or maintain your credit card or other financial account information; this information is handled for AES by our Service Providers. You are subject to the Privacy Policies and Terms and Conditions of our Service Providers when purchasing an AES membership, shopping for AES products, or making donations, the terms of which may differ from those of AES for the AES Services. Please review the Service Providers’ Privacy Policies and Terms and Conditions before using their services.

Form Information: We may use online forms to request certain information from you to perform certain Services, such as your location to assist you in locating our products, or your contact information to assist with contacts or service requests. This information may include Personal Data.

Correspondence Information: If you sign up for a membership, attend a conference or event, email us, or subscribe to our newsletter mailing lists, or publications, we may keep your message, email address, and contact information to respond to your requests, provide the requested products or Services, and to provide notifications or other correspondences to you. If you do not want to receive email from us in the future, you may let us know by sending us an email at the address below or logging into your account at https://my.aesnet.org/ and updating your communication preferences. Please note requests to remove your email address from our lists may take some time to fulfill. We may also still contact you as needed to provide important announcements or notifications regarding the Services.

Support Information: You may provide information to us via a support request submitted through the Services. We will use this information to assist you with your support request and may maintain this information to assist you or other Users with support requests. Please do not submit any information to us via a support submission, including confidential or sensitive information, that you do not wish for AES or our Service Providers to have access to or use in the future.

Information We Collect Automatically

Cookies, Web Beacons, Links, and Other Tracking Technologies: AES may keep track of how you use and interact with the Services through the use of cookies, web beacons, links, and other tracking technologies. We do this to help analyze the use of and improve the Services. Through these technologies we may automatically collect information about your use of the Services and other online activities, including our email correspondences, third-party services, and client applications, and certain online activities after you leave the Services. Link information is generally only analyzed on an aggregate basis. Some Services may not function properly if you disable cookies. Such data may include analytics information, sites visited before visiting the Services, browser type, operating system, and tracking of your interactions with our content and emails.

Unique Identifiers: When you use or access the Services, we may access, collect, monitor, store on your device, and/or remotely store one or more "Unique Identifiers," such as a universally unique identifier (“UUID”). A Unique Identifier may remain on your device persistently, to help you log in faster and enhance your navigation through the Services. Some features of the Services may not function properly if use or availability of Unique Identifiers is impaired or disabled.

Log File Information: When you use our Services, we may receive log file information such as your IP address, browser type, access times, domain names operating system, the referring web page(s), pages visited, location, your mobile carrier, device information (including device and application IDs), search terms, and cookie information. We receive log file data when you interact with our Services, for example, when you visit our websites, sign into our Services, or interact with our email notifications. AES uses log file data to provide, understand, and improve our Services, and to customize the content we show you. AES may link this log file to other information AES collects about you via the Services.

Public Information: AES may also collect information about you from publicly available sources. Information you make publicly available in any public or open forum, such as on a social network, may be considered public information for the purposes of this Privacy Policy, and may be accessed and collected by AES. Please be aware that any content or information you share with or provide to third parties using or related to your use of the Services is neither private, nor confidential. AES is not responsible for any content or information you post or share with third parties. If you do not wish for certain information to be public, please do not share it.

Information Sharing

AES Personnel: AES’s personnel may have access to your information as needed to provide and operate the Services in the normal course of business. This includes information regarding your use and interaction with the Services.

Service Providers: AES works with various organizations and individuals to help provide the Services to you ("Service Providers"), such as website and data hosting companies and companies providing analytics information, like Google Analytics. We may share your personal information with our Service Providers for the purpose of providing the Services. The information we share to our Service Providers may include both information you provide to us and information we collect about you, including Personal Data and information from data collection tools like cookies, web beacons, log files, Unique Identifiers, and location data. AES takes reasonable steps to ensure that our Service Providers are obligated to reasonably protect your information on AES’s behalf. If AES becomes aware that a Service Provider is using or disclosing information improperly, we will take commercially reasonable steps to end or correct such improper use or disclosure.

Business Transactions: AES may purchase other businesses or their assets, sell our business assets, or be involved in a bankruptcy, merger, acquisition, reorganization or sale of assets (a “Business Transaction”). Your information, including Personal Data, may be among assets sold or transferred as part of a Business Transaction.

Lawful Requests: We may be required to disclose User information pursuant to lawful requests, such as subpoenas or court orders, or in compliance with applicable laws. We generally do not disclose User information unless we have a good faith belief that an information request by law enforcement or private litigants meets applicable legal standards. We may share your information when we believe it is necessary to comply with applicable laws, to protect our interests or property, to prevent fraud or other illegal activity perpetrated through the Services or using the AES name, or to protect the safety of any person. This may include sharing information with other companies, lawyers, agents, or government agencies. Nothing in this Privacy Policy is intended to limit any legal defenses or objections that you may have to a third party’s, including a government’s, request to disclose your information.

Your Rights and Choices Regarding Your Information

Your Rights

Relevant data protection laws provide you certain rights regarding the protection of your data, including the right to:

• access
• rectification
• erasure
• restrict processing
• object to processing
• data portability
• complaint to a supervisory authority
• withdraw consent

More information about your rights relating to AES and the Services is provided via this Privacy Policy.

Access to the Information AES Has Collected about You

AES provides certain tools and settings within the Services to help you access, correct, delete, or modify your personal information associated with the Services . You may contact us regarding the information we have collected about you, including regarding the nature and accuracy of the data that has been collected about you, to request an update, modification, or deletion of your information, to opt-out of certain Services’ uses of your information, or to withdraw any consent you may have granted to AES.

Please note requests to delete or remove your information do not necessarily ensure complete or comprehensive removal of the content or information posted, and removed information may persist in backup copies indefinitely. Please note that if you choose to delete your information or opt-out of the collection and use of your information, you understand that certain features, including but not limited to access to the Services, may no longer be available to you.

We may store the information we collect about you indefinitely, but information generally will be retained only for as long as necessary to fulfill the purposes for which the information was collected , or as otherwise required by law. Following termination or deactivation of an AES Account, AES may retain your information and content for a commercially reasonable time for backup, archival, and audit purposes.

Opting-Out of Communications From AES

Users may opt-out of receiving certain communications from AES by following the unsubscribe process described in an email communication, updating your account at https://my.aesnet.org/, or by contacting us using the email address provided below. However, please note you may not opt-out of Services-related communications, such as account verification, changes or updates to features of the Services, or technical and security notices.

Do Not Track

AES does not currently employ a process for automatically responding to “Do Not Track” (DNT) signals sent by web browsers, mobile devices, or other mechanisms. Per industry standards, third parties may be able to collect information, including Personal Data, about your online activities over time and across different websites or online services when you use Services. You may opt out of online behavioral ads at http://www.aboutads.info/choices/. You also may limit certain tracking by disabling cookies in your web browser.

Information Security

Security of Your Information

AES takes reasonable efforts to secure and protect the privacy, accuracy, and reliability of your information and to protect it from loss, misuse, unauthorized access, disclosure, alteration and destruction. AES implements security measures as we deem appropriate and consistent with industry standards. As no data security protocol is impenetrable, AES cannot guarantee the security of our systems or databases, nor can we guarantee that personal information we collect about you will not be breached, intercepted, destroyed, accessed, or otherwise disclosed without authorization. Accordingly, any information you transfer to or from Services is provided at your own risk.

Please do your part to help us keep your information secure. You are responsible for maintaining the confidentiality of your passwords and accounts created to access the Services, and are fully responsible for all activities that occur under your passwords or accounts. AES specifically reserves the right to terminate your access to the Services and any contract you have with AES related to the Services in the event it learns or suspects you have disclosed your AES account or password information to an unauthorized third party.

Additional Provisions Regarding the Services and Your Information  

Transfer and Storage of Your Information

Please note information AES collects about you may be transferred, processed and/or accessed by us in the United States, or another country where we, or our Service Providers operate. Please be aware Personal Data may be transferred to, and maintained on, computers located outside of your state or country where privacy laws may differ from and may not be as protective as those where you live. If you are located outside the United States and choose to allow us to collect information about you, please be aware that AES may transfer your Personal Data to the United States and process and store it there.

If you are located in the European Economic Area ("EEA") or other regions with laws governing data collection and use that may differ from U.S. law, please note that we may transfer information to a country or jurisdiction that does not have the same data protection laws as your jurisdiction, as disclosed in this Privacy Policy. It may also be processed by staff operating outside the EEA who work for us or for one of Service Providers, also as disclosed.

Website Hosting: AES works with Contegix as its web hosting services provider. Contegix is located in Ashburn, Virginia, in the United States and the Websites are stored by Contegix in Reston, Virginia, in the United States. AES shares your data, including Personal Data, with our website hosting Service Provider for the purposes of processing your data pursuant to your use of the Services.

AES also works with Protech Associates, Inc. (“Protech”) as its website hosting services provider. Protech is located in Columbia, Maryland, in the United States and the website is stored in a Microsoft Azure Data Center located in the United States. AES shares your data, including Personal Data, with our website hosting Service Provider for the purposes of processing your data pursuant to your use of the Services.

Data Hosting: AES works with Protech as its data hosting services provider. Protech is located in Columbia, Maryland, in the United States and AES’s data is stored in a Microsoft Azure Data Center located in the United States. AES shares your data, including Personal Data, with our website hosting Service Provider for the purposes of processing your data pursuant to your use of the Services.

Safely Using AES’s Services

Despite AES’s safety and privacy controls, we cannot guarantee the Services are entirely free of illegal, offensive, pornographic, or otherwise inappropriate material, or that you will not encounter inappropriate or illegal conduct from other Users when using the Services. You can help AES by notifying us of any unwelcome contact by contacting us using the information below.

Your California Privacy Rights

Under California Civil Code Section 1798.83 (known as the "Shine the Light" law), AES members and customers who are residents of California may request certain information about our disclosure of personal information during the prior calendar year to third parties for their direct marketing purposes. To make such a request, please write to us at the address below or at dataofficer@aesnet.org with "Request for California Privacy Information" on the subject line and in the body of your message. We will comply with your request within thirty (30) days or as otherwise required by the statute. Please be aware that not all information sharing is covered by the "Shine the Light" requirements and only information on covered sharing will be included in our response.

Changes to Our Privacy Policy 

AES may modify this Privacy Policy from time to time. The most current version of this Privacy Policy will govern our use of your information and will be located at https://www.aesnet.org/about_aes/privacy_policy. You may contact us to obtain prior versions. We will notify you of material changes to this policy by posting a notice at the Services or by emailing you at an email address associated with your AES Account, if applicable, and provide an “at a glance” overview of any changes. 

Data Protection Officer

135 South LaSalle Street, Suite 2850

Chicago, IL 60603

P: 312.883.3800

dataofficer@aesnet.org

How to contact us

If you have any general questions about the Site or the information we collect about you and how we use it, you can contact us at elc@aesnet.org .

Last Modified July 2020