Last updated: January 2022
Welcome to the Epilepsy Foundation.
"Personal Information" is information that identifies or relates to a particular individual. Examples of Personal Information include, among others:
- Email address
- Phone number
- Mailing address
- Online identifiers
We use Personal Information for the following purposes:
- Providing our Site to you
- Analyzing, administering, and improving the Site and our services to users
- Enabling secure use of the Site
- Sending information and promotional materials by mail or email
- For our Epilepsy Learning Portal users this includes: emails about our site and related course(s), registration, course content, your course progress and other updates. We may also email you updates about the Epilepsy Foundation’s work. You can visit the portal at learn.epilepsy.com.
- Protecting our rights or our property
- Meeting legal obligations
- For other purposes related to the reasons for which you provide Personal Information, including when you consent to research and to adding to the general knowledge about epilepsy education and treatment services
What personally identifiable information does the Foundation collect from me?
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.
What happens when I sign up with the Foundation online?
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.
What is a cookie and how does the Foundation use them?
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.
How do I change my personal information or stop receiving online information from the Foundation?
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 www.epilepsy.com or purchased items by entering the corrected information.
- If you would like to change information in your My Seizure Diary, go to account settings in your diary account. If you wish to unsubscribe from the diary mailing list, contact Diary@efa.org.
- If you no longer want to receive newsletters, subscriptions to community forums, marketing or other information from the Foundation sent to your email address, you may unsubscribe by updating your profile on www.epilepsy.com.
- If you are a member of the Foundation and would like to update your records, please contact the Foundation by telephone (1-800-332-1000) or letter.
3540 Crain Highway
Bowie, MD 20716
How does the Foundation protect my confidential information?
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.
How are children who use the Foundation's website protected?
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.
Linked Internet Websites
3540 Crain Highway, Suite 675, Bowie, MD 20716
Learning Management Systems Including Epilepsy Learning Portal
Release of Learner Records
Request From Learners:
The Epilepsy Foundation ensures the confidentiality and security of all training records. The availability of training records is necessary to ensure that learners have access to their professional development credits and are able to report their activities to relevant stakeholders such as their schools, districts, or state education agencies.
Director, Training and Education, Evaluation Manager, and Administrative Staff shall ensure the privacy of learners and ensure records are shared with only authorized entities. Student records will be maintained for a minimum of seven (7) years in adherence to Epilepsy Foundation record retention requirements.
If a user has a problem accessing the information, they may contact email: firstname.lastname@example.org or call 847-348-0373 for assistance.
Request From Third Parties:
The Epilepsy Foundation receives funding from the Centers for Disease Control and Prevention (CDC). The Epilepsy Foundation and the CDC want to ensure that we are reaching all populations with seizure education.
Following CDC requirements, some personal demographic information (date of birth, income, race/ethnicity, gender, occupation, workplace information) is collected.
- This demographic information is reported in aggregate to the CDC.
- The information is not tied to individual identifiers (name, address, email, school info).
- If participants do not want to share this information, please choose the option, "I prefer not to answer."
The Epilepsy Foundation will provide reports to the local Epilepsy Foundation office to include training date and participant information (name, address, email, workplace information.) Only contact information is shared - no demographic information is shared with local offices of the Epilepsy Foundation.
For states with mandated epilepsy and seizure first aid training, the Epilepsy Foundation may be required to report to the state education agency. Information such as training date and participant name, address, email, or workplace information may be shared.
By using the Epilepsy Foundation My Seizure Diary feature, you agree to the following terms and conditions:
- If you create a personal Diary, you are the only website user who can view and edit your information unless you choose to share your information with other users. If you chose to share your information with others including caregivers, family, or your clinicians, you can view a list of who has access to your information.
- Your provision of access to your personal Diary by others may result in third parties misusing your information and is at your own risk.
- At any time, you can take away someone's ability to access your personal Diary and that person will no longer be able to read your health-related information, but they may have already seen or may retain a copy of the information.
- You are responsible for taking all reasonable steps to ensure that no unauthorized person shall have access to your Epilepsy Foundation passwords or accounts and for choosing a username and password on Epilepsy.com that would not compromise security on any other website.
- For technical help with your personal Diary, you may have to provide your username and password to the website. You should not enter information into the Diary that would identify you personally.
- You will not receive any payment or other reimbursement for use of the information entered into the Diary.
- The Diary does not provide diagnosis, treatment, or other medical advice. You should seek those from your doctors. If you are having a medical emergency, DO NOT use the Diary to communicate with your doctor or other health care provider.
- If you have any additional questions about your privacy on the Epilepsy Foundation's My Seizure Diary, please feel free to contact the Foundation at Diary@efa.org.
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.
Copyright © 1996–2020 Epilepsy Foundation of America, Inc. Bowie, MD. All rights reserved.
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.
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