The Children's Cardiomyopathy Foundation ("CCF") operates this website and its content, and its subdomains thereof ("Site"), and the services offered on or in relation to the Site ("Services"). This Privacy Policy ("Policy") describes the information we collect, how we use it, with whom we share it, and how you can control how your information is used. We do not collect personal information about you when you visit the Site unless you choose to provide that information to us. We will not use or share your information with anyone except as described in this Privacy Policy. We are committed to respecting your privacy and seek to protect it.

By visiting the Site or by using one of Services, you are accepting the practices in this Policy. We may amend this Policy at any time, and it is your responsibility to check for updates to this Policy. Your continued use of the Site following any changes to this Policy will constitute your acceptance of such changes. If you disagree with how we may use your information under this Policy, you should not use the Site. This Policy applies only to information collected through the Site and not to information collected offline.

This Statement was updated October 21, 2018.

Collecting Information

We collect information from you when you register on our Site or if you contact us through the Site. When registering on our Site, you may be asked to provide information such as your name, email address, address, phone number, and child's medical information that you freely choose to provide to CCF. By registering with CCF you agree to us sending you emails and other communications from time-to-time regarding information specific to our Service(s) or other related opportunities.

We may also collect Non-Personally Identifiable Information through tracking systems. Cookies, web beacons, and other tracking technologies may be stored on your computer and used to track activity. This includes information about your devices, including your IP address, location of the device, browser information, operating system, usage data, pages you visited on the Site, tally page views throughout our Sites, or other technical identifiers. You can choose to disable or turn off cookies or third-party cookies in your web browser at any time. However, please note that some of our Services may not fully function if your browser does not accept cookies.

Google Analytics is used to analyze traffic to our website. Google Analytics only collects aggregate data and does not maintain individual profiles for visitors or collect data that might identify the individual visitor. More information can be found on Google Analytics' privacy policy page.

Payment Processing

CCF uses a third-party payment service, such as Blackbaud eTapestry, to collect donations and/or process payment for event registrations made through the Site. If you make a donation or event registration through the Site, you will be directed to a website hosted by eTapestry and not by CCF. Any information that you provide through eTapestry's site will be subject to Blackbaud's privacy policy.

Use of Information

We may use your information for any lawful business purpose, including, but not limited to, corresponding with you; responding to your questions; sending announcements; notifying you about website maintenance, updates, and new features; offering or furnishing services; personalizing the types of information you receive from us; personalizing your experience; using for internal research purposes, developing content and functionality to better serve your needs; and improving the services we provide.

Sharing of Information

We do not sell, trade, or otherwise share your information with any unaffiliated third party except to the extent you have voluntarily agreed, or are clearly notified of and consent to by using the Service. We may also release your information when it is necessary to comply with applicable legal requirements or protect ours or other's rights, property, or safety.

Retaining the Information

We retain personal information in accordance with our general practices and as required or permitted by law. We will store your personal information only for as long as is required to fulfill the purposes set out above.

Users Outside of the United States

This Site is operated in the United States. By using our Site or providing us with your personal information, you are transferring your information to us in the United States where we collect, store, and process that information. We may provide information to the United States government or its agencies under applicable law. By using this Site and Services, and/or submitting your personal information, you agree to this collecting, processing, and storing of your data to and in the United States.

Third Party Sites

Our Site may provide links to third party websites and resources. Such links are provided to you for convenience and for informational purposes only. We do not endorse these third party sites. We have no control over these external sites and are not responsible for their availability, content, or delivery of services. Third party websites and resources are not bound by this Policy; they may have their own policies. We encourage you to read each website's privacy policy.

Delete and Deactivate Policy

Users may unsubscribe to any or all of our email communications at any time by sending a request via e-mail. If you no longer wish to use any services or receive any information from us, you may request to have your personal information removed from our databases by sending a request via e-mail ( or by fax (201-227-7016), and include your first and last name and the e-mail address with which you originally registered. Changes or corrections to your information may be submitted in the same fashion.

Children's Privacy

While we are a 501(c) (3) non-profit organization exempt from compliance with the Children's Online Privacy Protection Act ("COPPA"), we encourage parents and guardians to review in advance our privacy policy which describes the information we collect and our disclosure practices. The Website and Services are designed and intended for use by adults. We do not collect personally identifiable information from any person we know is under the age of 18.

Data Security

We use commercially reasonable security measures to protect and secure your personal information. However, we cannot guarantee the security of any information you disclose online. We do not make any warranty, express, implied or otherwise, that we will be able to prevent loss, misuse, unauthorized access to, or alteration of information you provide to us. Any disclosure of information that you make to us is at your own risk. We urge you to take every precaution to protect your information when you are on the internet, including when visiting the Site.

Managing your Information

If you wish to opt out of sharing your information as described herein, or if you no longer wish to use our services or receive any information from us, you may request to have your personal information removed from our databases by sending a request via e-mail. You may also unsubscribe to any or all of our email communications at any time by sending a request via e-mail. In addition, you have the opportunity to opt out of future ad serving cookies. If you would like to opt out of ad serving cookies, you may visit the Digital Advertising Alliance site for more information.

If you are within the European Union, you are entitled to certain information and have certain rights under the General Data Protection Regulation ("GDPR") related to your personal information. If you consent to the processing of your personal information, you may withdraw that consent at any time. You are entitled to request additional specific information in regards to the processing of your personal information, including requesting access to, correction of, and deletion of your personal information from our databases. You can also restrict the processing of your data and/or request that your information be provided in a portable format. All requests will be addressed within the legally required period of time and without cost to you. All requests can be made by sending a request via e-mail ( or by fax (201-227-7016). You also have the right to lodge a complaint with a supervisory authority that has jurisdiction over issues related to the General Data Protection Regulation ("GDPR").

Contact Information

If you have any questions regarding this Policy you can contact us via email at or via mail at P.O. Box 547 Tenafly, New Jersey 07670.