This is the privacy policy for The Brain Recovery Project dba Pediatric Epilepsy Surgery Alliance. This website is the property of The Brain Recovery Project dba Pediatric Epilepsy Surgery Alliance. We take the privacy of all visitors to this website very seriously and therefore set out in this privacy policy our position regarding certain privacy matters and the use of cookies for this website.

This policy covers all data that is shared by a visitor with us whether directly via www.epilepsysurgeryalliance.org, respond to a survey, or communicate with us via email. This policy provides an explanation as to what happens to any personal data that you share with us, or that we collect from you either directly via these websites or via email.

Information we collect

While using our site, we may ask you to provide us with certain personal data that can be used to contact or identify you (“Personal Data”). Personal Data may include, but is not limited to:

  • Email address
  • First name and last name
  • Phone number
  • Address, State, Province, ZIP/Postal code, City
  • Job title, profession
  • Your child’s name, photo, medical information, and educational information
  • Pictures or videos you submit
  • Bank or credit card information
  • Your donation history
  • Information (such as names) associated with social media posts

For example, in order to provide you with special education advocacy assistance, we may ask you for a copy of your child’s individual education plan, which would include your child’s name, diagnosis, medical background (including type of epilepsy surgery, etiology, and medical evaluations), and educational information (such as educational assessments and interventions). Or, when registering for one of our conferences, we may ask you for your child’s diagnosis so that you can be seated with other families with the same etiology, as well as credit card information to pay for tickets.

Information Collected Automatically

Like many websites, we and our third-party service providers, such as analytics providers, use cookies, web beacons and other data technologies to receive and store certain types of information when you interact with us through your computer or mobile device. Using these technologies helps us recognize you. Here are some of the types of information we collect:

  • Log & Device data. When you visit our site, we may automatically record information (“log data”), including information that your browser sends whenever you visit our site. This log data may include your web address you came from or are going to, your device model, operating system, browser type, unique device identifier, IP address, mobile network carrier, and time zone or location.
  • Our third party service providers may provide us information that tells us how are marketing ads, often placed on third party sites, performed and who clicked on them. This information does not identify any specific individual and is generally non-identifying. If we were to associate it with you we would treat it as personal data.

Use of Cookies

Cookie data. We may use “cookies” (a small text file sent by your computer each time you visit our site) or similar technologies to record log data. Many browsers default to accepting cookies. You may be able to change this setting in your browser and you can also clear your cookies. If you do, you may lose some functionality of our site. Check your browser’s help function to learn more about your cookie setting options.

We may use the following types of cookies:

  • Advertising and analytics: These cookies collect information about who is visiting our site and how users engage with our site. This information does not identify any individual user. It is aggregated and anonymous. Information included in this analysis is number of visitors to our site, referring websites, pages visited while on this site, time of day visited our site, if this is a new or repeat visitor, and other comparable information. This information is used to help us understand the usage of our site, improve and operate our services more efficiently, and to monitor the activity on our site. Please see below for a listing of our analytics providers.
    • Essential cookies: These cookies help run our site and make your experience better. These include cookies that all you access to a members only part of the site or help the content of our site load quickly. These cookies are only used to provide you with these services.
    • Functionality cookies: These cookies allow the site to remember preferences you have selected such as login details or other selections you may have made. These are designed to make it easier to use our site and not have to set the same preferences every time.
    • Social Media cookies: We use social media tools on our site and these cookies allow the social media network to record when you have liked or engaged with a social media tool on our site. In some situations, the social network may send us data that you have set to share. f you do not want the social media network to share information with us, please check your privacy settings with the social media network.
    • Advertising cookies: These cookies allow you to track browsing habits as you visit the site. Based on your browsing history and with our permission, we use third party advertising partners who can then display to you a relevant ad when you are on a third-party site such as a social media platform. Within these cookies, we may also know your precise location such as latitude, longitude, GeoIP, and other location specific information. Please see below for your choices on cookies in the use of advertising.
  • To help us make e-mails more useful and interesting, we often receive a confirmation when you open e-mail from us if your computer supports such capabilities. You can opt out of receiving emails from us. Please see the Your Choices section below.
  • We might also use a pixel tag which is a small graphic file that allows us and third parties to monitor the use of the site and provide us with information based on your interaction with the site. These tags may collect the IP address from the device which you loaded the page, the browser type. Pixel tags are also used by our third parties to collect information when you visit our site, the links and other actions you take on our site, and we may use this information in combination with cookies to display targeted advertisements.
  • Other data technologies may be used that collect comparable information for security and fraud detection purposes.
  • If you have any questions about cookies you can go to http://www.allaboutcookies.org/.

Use of Your Information – Grounds for Using Your Personal Data

The information that we collect and store relating to you is primarily used to enable us to provide our information and services to you. In addition, The Brain Recovery Project is relying on the following lawful grounds to collect and process any personal data you may have provided:

  • Legitimate Business Interests: To provide you with information requested from us relating to our services and to provide information on other services which we feel may be of interest to you if you have consented to receive such information, which are legitimate business interests. To notify you about any changes to our Website, such as improvements or service changes, that may affect our service. If you are an existing customer, we may contact you with information about services similar to those which were the subject of a previous sale to you.
  • Performance of Contract: To meet our contractual commitments to you and in performance of contractual obligations to you.
  • User Consent: We may use your data, or permit selected third parties to use your data, so that you can be provided with information about unrelated goods and services which we consider may be of interest to you. We or they may contact you about these goods and services by any of the methods that you consented to at the time your information was collected. If you are a new customer, we will only contact you or allow third parties to contact you only when you have provided consent and only by those means you provided consent for. If you do not want us to use your data for ourselves or third-parties, you will have the opportunity to withhold your consent to this when you provide your details to us on the form on which we collect your data.
  • Please be advised that we do not reveal information about identifiable individuals to our advertisers, but we may, on occasion, provide them with aggregate statistical information about our visitors such as your area of residence or age group.

Sharing and Disclosure

We do not share your personal information with others except as indicated within this policy or when we inform you and give you an opportunity to opt out of having your personal information shared.

We will share your information in the following ways.

  • With third party service providers, agents, or contractors. We use other companies, agents or contractors (“Service Providers”) to perform services on our behalf or to assist us with providing services to you. For example, we may engage Service Providers to process credit card transactions or other payment methods. Or, we may engage Service Providers to provide services such as marketing, advertising, communications, infrastructure and IT services, to provide customer service, to collect debts, and to analyze and enhance data (including data about users’ interactions with our service). These Service Providers may have access to your personal or other information in order to provide these functions. In addition, some of the information we request may be collected by third party providers on our behalf. We do not authorize them to use or disclose your personal information except in connection with providing their services.
  • Analytics. Specifically for analytics providers, we use Google Analytics which is a web analytics service offered by Google that tracks and reports website traffic. Google uses the data collected to track and monitor the use of our Service. This data is shared with other Google services. Google may use the collected data to contextualize and personalize the ads of its own advertising network.
    • You can opt-out of having made your activity on the Service available to Google Analytics by installing the Google Analytics opt-out browser add-on. The add-on prevents the Google Analytics JavaScript (ga.js, analytics.js, and dc.js) from sharing information with Google Analytics about visits activity. For more information on the privacy practices of Google, please visit the Google Privacy & Terms web page: http://www.google.com/intl/en/policies/privacy/ Google also recommends installing the Google Analytics Opt-out Browser Add-on – https://tools.google.com/dlpage/gaoptout – for your web browser. Google Analytics Opt-out Browser Add-on provides visitors with the ability to prevent their data from being collected and used by Google Analytics. Please note at this time, we do not recognize automated browser signals regarding tracking mechanisms, which may include “do not track” instructions.
    • Google AdWords/Analytics Google AdWords remarketing service is provided by Google Inc. You can opt-out of Google Analytics for Display Advertising and customize the Google Display Network ads by visiting the Google Ads Settings page: http://www.google.com/settings/ads. For more information on the privacy practices of Google, please visit the Google Privacy & Terms web page at http://www.google.com/intl/en/policies/privacy/
    • Twitter You can opt-out from Twitter’s interest-based ads by following their instructions: https://support.twitter.com/articles/20170405 You can learn more about the privacy practices and policies of Twitter by visiting their Privacy Policy page: https://twitter.com/privacy
    • Facebook You can learn more about interest-based advertising from Facebook by visiting this page: https://www.facebook.com/help/164968693837950 To opt-out from Facebook’s interest-based ads follow these instructions from Facebook: https://www.facebook.com/help/568137493302217 To see more about Facebook’s participation in the Digital Advertising Alliance please visit the Choices section of this notice. For more information on the privacy practices of Facebook, please visit Facebook’s Data Policy: https://www.facebook.com/privacy/explanation
    • Payment Providers: We may provide paid products and/or services within the site for donation and service payment purposes. When we do, we use third-party services for payment processing (e.g. payment processors). We will not store or collect your payment card details. That information is provided directly to our third-party payment processors whose use of your personal information is governed by their own privacy notice. The payment processors we work with adhere to the standards set by PCI-DSS as managed by the PCI Security Standards Council, which is a joint effort of brands like Visa, Mastercard, American Express and Discover. PCI-DSS requirements help ensure the secure handling of payment information. The payment processors we work with are:
  • To comply with legal process or to protect The Brain Recovery Project. If we believe that disclosure is reasonably necessary to comply with a law, regulation, legal or governmental request; to enforce applicable terms of use, including investigation of potential violations thereof; to protect the safety, rights, or property of the public, any person, or The Brain Recovery Project as required by law; or to detect, prevent, or otherwise address, security or technical issues or illegal or suspected illegal activities (including fraud).
  • Business Transfers. We may engage in a merger, acquisition, bankruptcy, dissolution, reorganization, or similar transaction or proceeding that involves the transfer of the information described in this Policy. In such transitions, customer information is typically one of the business assets that is transferred or acquired by a third party. In the unlikely event that we or substantially all of our assets are acquired or enter a court proceeding, you acknowledge that such transfers may occur and that your personal information can continue to be used as set forth in this privacy policy.

Storing Your Personal Data/Transfer of Data

This site is operated in the United States. If you are located in another jurisdiction, please know that your information will be transferred to, stored, and processed in the United States. By using this site and providing us with information, you consent to this transfer, processing and storage of your information in the United States. It is important to note that the privacy laws in the United States may not be as comprehensive as those in other countries such as the European Union. Our service providers use appropriate safeguards to transfer your personal data to the United States.

  • We may transfer data that we collect from you to locations outside of headquarters for processing and storing. In addition, it may be processed by staff operating outside the office area who work for us or for one of our suppliers. For example, such staff may be engaged in the processing and concluding of your order, the processing of your payment details and the provision of support services. By submitting your personal data, you agree to this transfer, storing or processing. We will take all reasonable steps to make sure that your data is treated securely and in agreement with this privacy policy.
  • Data that is provided to us is stored on our secure servers. Details relating to any transactions entered into via our site will be encrypted to ensure its safety.
  • The transmission of information via the internet is not completely secure and therefore we cannot guarantee the security of data sent to us electronically and the transmission of such data is entirely at your own risk. Where we have given you (or where you have chosen) a password so that you can access certain areas of our site, you are responsible for keeping this password confidential.

Third Party Links

We may have links on our site to other sites that we do not operate. If you click on a third-party link, you will be taken directly to that site which is governed by its own privacy notice. We strongly encourage you to read that privacy notice. We do not control that site and assume no responsibility for the content, policies or its practices.

Choices and Individual Rights

We aim to take reasonable steps, so you can correct, amend, delete or limit the use of your Personal Data.

We outline your choices below:

  • E-mail. As described above, if you do not wish to receive promotional e-mails from us, you may opt out at any time. If you opt out of a promotional e-mail, we may still send you transactional and administrative emails about this privacy notice or about the products or services you have purchased.
  • Cookies. Your browser’s help function should contain instructions on how to set your computer to accept all cookies, to notify you when a cookie is issued, or to not receive cookies at any time.
  • Advertising. You can opt out of online targeted advertising by opting out within the advertisement itself or by visiting Digital Advertising Alliance, http://www.aboutads.info/, the Digital Advertising Alliance of Canada in Canada http://youradchoices.ca/ or the European Interactive Digital Advertising Alliance in Europe http://www.youronlinechoices.eu/. You can also opt out of the Digital Advertising Alliance using your mobile device settings.
  • Your rights under certain circumstances. To initiate any of these actions please contact us at privacy@brainrecoveryproject.org
    • To access and receive a copy of the Personal Data we hold about you.
    • To rectify any Personal Data held about you that is inaccurate
    • To request the deletion of Personal Data held about you
    • You have the right to data portability for the information you have provided to us. You can request to obtain a copy of this information in a commonly used electronic format so that you can manage and move it. We will need to verify your identity before being able to respond to such requests.
    • Please note that in some cases, we may not be able to remove your personal information, in which case we will let you know if we are unable to do so and why.
  • Right to Lodge a Complaint. For European Union residents, if you feel that our processing of your personal data infringes on data protection laws, you have a legal right to lodge a complaint with a supervisory authority responsible for data protection. You may do so in the EU member state where you habitually reside, your place of work or the location of the alleged infringement. If you are located outside of the European Union, you may have rights under privacy laws in the jurisdiction where you live.

Security

We use reasonable administrative, logical, physical and managerial measures to safeguard your personal information against loss, theft and unauthorized access, use and modification. Unfortunately, no measures can be guaranteed to provide 100% security. Accordingly, we cannot guarantee the security of your information.

Retention

The Brain Recovery Project dba Pediatric Epilepsy Surgery Alliance will retain your Personal Data only for as long as is necessary for the purposes set out in this Privacy Notice. We will retain and use your Personal Data to the extent necessary to comply with our legal obligations (for example, if we are required to retain your data to comply with applicable laws), resolve disputes, and enforce our legal agreements and policies.

The Brain Recovery Project dba Pediatric Epilepsy Surgery Alliance will also retain Usage Data for internal analysis purposes. Usage Data is generally retained for a shorter period of time, except when this data is used to strengthen the security or to improve the functionality of our Service, or we are legally obligated to retain this data for longer time periods.

Sensitive Data

We request that you do not send us any sensitive data such as social security or national identification numbers, information related to racial or ethnic origin, political opinions, religious beliefs, health data, biometrics or genetic, criminal background or trade union membership information. If you do send us this information, then you are consenting to its processing in accordance with this privacy notice. To avoid processing of sensitive data, do not submit it.

Our Policy On Children’s Information

Our site is not directed to children under age 18. If you learn that your minor child has provided us with personal information without your consent, please contact us at privacy@epilepsysurgeryalliance.org.

Contacting Us

We welcome any queries, comments or requests you may have regarding this policy please do not hesitate to contact our Data Protection Officer at privacy@epilepsysurgeryalliance.org. The Brain Recovery Project takes its users’ privacy concerns seriously. If you believe that The Brain Recovery Project has not complied with this Privacy Policy with respect to your Personal Information, you may contact the Data Protection Officer at The Brain Recovery Project dba Pediatric Epilepsy Surgery Alliance, 969 Colorado Blvd, Suite 101, Pasadena, CA 90041. In your letter please describe in as much detail as possible the ways in which you believe that the Privacy Policy has not been complied with. We will investigate your complaint promptly. If you do not receive acknowledgment of your complaint or your complaint is not satisfactorily addressed, please contact our U.S.-based third party dispute resolution provider (free of charge) at https://feedback-form.truste.com/watchdog/request