Last updated: December 2020
"Personal Information" is information that identifies or relates to a particular individual. Examples of Personal Information include, among others:
We use Personal Information for the following purposes:
The Epilepsy Foundation respects the personal privacy of the visitors to our website. We believe keeping your information private and in a secure environment is very important. When you browse the informational portion of our website, you do so anonymously. Personal information is not collected, unless you voluntarily provide us with that information as described below. To participate in our Community, you must provide an email address or user name, and a password. (Please note that it is not a closed community and posts can be found via search engine outside of the website.) We will not share with third parties your name, street address, telephone number or email address without your consent. We do not sell or rent your personal information. We provide no mechanism for an advertiser to reach you, unless you sign up directly with an advertiser or outside vendor.
In order for the Epilepsy Foundation's website, epilepsy.com, apps and other digital platforms to improve its performance and design and to provide you with better services, we track anonymous aggregate usage information through analysis of log files. The type of information collected is basic statistical data, such as channels and sections viewed, time of access and amount of time, search phrases used to reach the Foundation's website, browser type, and anonymized data from users. This information is not personally identifying you in any way, and we cannot get back to you, the user, through this data. We use this aggregated and anonymized information in order to learn what are the most popular sections of our website, for general promotional purposes, and for making decisions about the future strategy and direction of the website. The aggregated and/or anonymized information may also be shared with third parties to promote Epilepsy Foundation services and the website or to add to general knowledge concerning the public's need for epilepsy education and treatment services.
You voluntarily provide us with personal information when you choose to become a website member, make a donation, join our Speak Up Speak Out grassroots network or Newsroom, join our Community, subscribe to one of our e-newsletters, use My Seizure Diary, participate in a research campaign, and when you purchase a product from our catalog or online store. The information we collect through these transactions includes such things as your name, address, phone number, email address, seizure information, and, when you make a financial transaction, your credit card number. This allows the Foundation to send you messages and to share information with you that we think you may find useful. We study our users' demographics, interests, records, and behavior based on this information voluntarily provided for a variety of reasons, including to have better information on the needs of people with epilepsy, to do internal research, and to understand how to improve our services.
User records are kept in the strictest of confidence. At times, we select and offer portions of our mailing list to carefully screened organizations that we believe may interest you. We may also ask you to consent to participate in external research related to your records. If you do not want to receive this information, or if you would like to have your name removed from future communications, please let us know by sending an email to ContactUs@efa.org.
You may choose to set the Internet properties of your computer so that you are alerted each time a cookie is being stored on your computer or you may choose to prohibit the collection of cookies all together. In addition, you may delete cookies that have already been stored on your hard drive. If you do prohibit the collection of cookies, understand that you will need to re-enter your email and other information each time you go to the portion of our website that requires the input of identifying information.
If you need to change your personal information, you may do so at any time by simply going to the part of the website where you registered for, go to www.epilepsy.com, or purchased items by entering the corrected information.
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If you have shared with us your credit card number in order to purchase an item from our online store or to make a donation to the Foundation, your credit card number is stored on a secure server and is protected by firewalls. The Foundation uses computer encrypted technology to protect your information and this information is kept confidential. The Foundation sometimes contracts with outside vendors and business partners to fulfill customer services and hosting services on the website. When we do so, we enter into confidentiality and non-disclosure agreements with all vendors stating that they will hold information received through our website confidential and will not sell or share user information to any third party or use the information for their own personal use. All employees of the Epilepsy Foundation are held accountable for our privacy principles and each employee is personally responsible for maintaining customer confidence in the company.
Despite these efforts to store Personal Information in a secure operating environment, we cannot guarantee the security of Personal Information during its transmission or its storage on our systems. Further, while we attempt to ensure the integrity and security of Personal Information, we cannot guarantee that our security measures will prevent third parties such as hackers from illegally obtaining access to Personal Information. We do not represent or warrant that Personal Information about you will be protected against, loss, misuse, or alteration by third parties.
The Foundation may disclose information to law enforcement and other governmental or court authorities in the rare case when we are required to do so or if there is reason to believe that disclosure is necessary to identify, contact or bring legal action against someone who may be causing injury to or interference with (either intentionally or unintentionally) the Epilepsy Foundation's rights or property, other website users or anyone else that could be harmed by such activities.
The Foundation is concerned about the safety of minors who use the Internet. We want you and your family to feel secure when visiting our website. Children under 13: Do not send us any information about yourself or your family if you are under age 13 — including information like your name, address or email address — unless you have asked your parents for permission to do so. The Foundation will not knowingly request personal identifying information from children under the age of 18 without parental consent. If we learn that we have personal information from a child under 18, we will delete that information from our database as soon as possible. The Community Forums and Chat Rooms are intended for use by people age 13 or older.
The Epilepsy Foundation is committed to efficiency and transparency. We communicate with our supporters, donors, and prospective donors by email, postal mail, phone, and other means, both to request contributions to our cause and to educate the public about epilepsy and seizures, volunteer opportunities, and events in local communities and around the world. These efforts help advance our mission to lead the fight to overcome the challenges of living with epilepsy and to accelerate therapies to stop seizures, find cures, and save lives. As a result, in accordance with the Financial Accounting Standards Board (FASB) guidelines and Internal Revenue Service (IRS) guidance, the Epilepsy Foundation allocates a portion of our fundraising costs to program services. As a nonprofit organization that is exempt from federal taxation, we ensure our donors' money is spent as efficiently and effectively as possible.
By using the Epilepsy Foundation My Seizure Diary feature, you agree to the following terms and conditions:
If you have any additional questions about your privacy on the Epilepsy Foundation's website, or if you believe that your privacy may have been violated by the Foundation, please feel free to contact the Foundation at ContactUs@efa.org.
In order to delete your data, please reach out to 301-459-3700 or firstname.lastname@example.org. Please note some of your data may still be stored on third party sites.
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The information available on epilepsy.com is the property of the Epilepsy Foundation and is protected by copyright and other intellectual property laws. All registered trademarks of the Epilepsy Foundation, including the name "Epilepsy Foundation," "Epilepsy Therapy Project," and the respective logos, cannot be used by anyone for any purpose without the express, written consent of the Epilepsy Foundation.