Privacy Policy

Last updated: October 11, 2022

Maintaining the privacy and security of personal information is a high priority for us. The Fibrolamellar Cancer Foundation (FCF) has an ethical and legal obligation to respect the privacy of all participant information.

I. Scope of this Privacy Policy

This Privacy Policy describes the types of personal information the Fibrolamellar Cancer Foundation (“Fibrolamellar Cancer Foundation,” “FCF,” “Foundation,” “Fibrolamellar Forum,” “we,” “us,” or “our”) collects and protects when you visit www.fibrofoundation.org, www.fibrolamellar.org, and www.fibroforum.org (collectively, the “Site”), respond to a survey, or become a member of the online community. This Privacy Policy does not govern our collection of personal information through any website or other means, other than through the Site. Please see our Donor Privacy Policy for additional details about how the Fibrolamellar Cancer Foundation protects donor information gathered from both online and offline interactions.

The Fibrolamellar Cancer Foundation is committed to ensuring that your privacy is protected. Should we ask you to provide certain identifying information, it will only be used in accordance with this privacy statement.

We will not sell, distribute, or lease your personal information to third parties unless we have your permission or are required by law to do so. We may use your personal information to send you information that we think may be of interest to you. The Fibrolamellar Cancer Foundation may change this policy by updating this page. You should check this page to be sure that you understand and accept any changes.

By using the Site, you explicitly accept, without limitation or qualification, our practices surrounding the collection, use, and sharing of personal information provided by you in the manner described in this Privacy Policy. If you do not agree with the terms of this Privacy Policy, please do not access, browse, or use the Site.

II. Personal Information We Collect

A. Actively Collected Information
This Site offers Site users the ability to learn about Fibrolamellar Cancer Foundation and to contribute to Fibrolamellar Cancer Foundation research and other supportive causes, for example, by donating individually, and creating or joining a fundraising team. While you do not have to give us any personal information to browse this Site, you may be asked to provide personal information if you wish to register as a user, submit information to us, or use the services offered through this Site. This information may include your full name, e-mail address, postal address, other demographic information, location, photographs, videos, your relationship to fibrolamellar carcinoma (“FLC”) – for example, as a patient, family member of a patient, or clinician/researcher, and any other information you voluntarily provide. We may also collect your email address if you communicate with us by email. Once you provide us with personal information about you, you are no longer anonymous to us.

In order to make a donation to the Fibrolamellar Cancer Foundation through the Site, you will be required to provide us with the following personal information about you: full name, billing address, e-mail address, telephone number, credit/debit card number, credit/debit card expiration date, credit/debit card CVV number, credit/debit card type (Visa, MasterCard, Discover, or American Express), and such other financial information necessary to process your payments. You may also be asked to indicate whether your employer will match your donation, whether your current estate plan provides for Fibrolamellar Cancer Foundation, and your relationship to FLC (for example, as a patient, family member of a patient, or clinician/researcher).

B. Passively Collected Information

We may collect certain information about your use of the Site through the use of tracking technologies or by other passive means. We may use Google Analytics to help us collect and analyze this information. This “passively collected” information includes, but is not limited to, the domain name of the website that allowed you to navigate to the Site, search engines used, the internet protocol (IP) address used, the length of time spent on the Site, the pages you looked at on the Site, other websites you visited before and after visiting or accessing the Site, the type of internet browser you have, the frequency of your visits to the Site, and other relevant statistics, including the following:

• Log Information. When you access the Site, our servers automatically record information that your browser sends whenever you visit a website. These server logs may include information such as your web request, IP address, MAC address, computer type (e.g., Windows or Macintosh), operating system version, browser type and version, browser language, the date and time of your request, and one or more cookies (small text files containing a string of characters) that may uniquely identify your browser. We use this information to calculate Site usage levels, to diagnose server problems, to administer the Site, and to improve the quality of the Site.
• Links. The Site may include links in a format that enables us to keep track of whether these links have been followed by IP addresses. We use this information to improve the quality of the Site design.
• Cookies. When you visit or access the Site, we send one or more cookies (small text files containing a string of characters that asks permission to be placed on your computer’s hard drive) to your computer that uniquely identify your browser. We use cookies to improve the quality of the Site by storing user preferences and tracking user trends. We only use this information for statistical analysis purposes. Cookies also help us better serve you with more tailored information and facilitate your ongoing access to and use of the Site. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us. Most web browsers accept cookies automatically, but can be configured not to do so or to notify the user when a cookie is being sent. If you wish to disable cookies, refer to your browser help menu to learn how to disable cookies. Please note that if you disable cookies, you may not be able to use some customized features on the Site.
• Web Beacons. Web beacons (also known as “pixel tags” or “clear “GIFs”) are 1×1 single-pixel graphics that allow us to count the number of users who have visited or accessed the Site and to recognize users by accessing our cookies. We may employ web beacons to facilitate Site administration and navigation, to track the actions of users of the Site, to compile aggregate statistics about Site usage and response rates, and to provide an enhanced online experience for visitors to the Site. We may also include web beacons in HTML-formatted e-mail messages that we send to determine which e-mail messages were opened.

III. How We Use Personal Information
Personal information collected through the Site may be used by the Fibrolamellar Cancer Foundation and its affiliates for purposes of:

• Processing donations made through the Site;
• Creating a list of donors who have contributed to the Fibrolamellar Cancer Foundation;
• Responding to your questions, emails, or other inquiries or requests;
• Contacting you, whether by email or postal mail, with information about the Site or our programs, services, and fundraising efforts such as newsletters, organizational updates, updates about research on FLC, or new diagnostic or treatment options, or to conduct surveys or gather other information regarding the Site;
• For such purposes as you may authorize at the time you submit the information;
• Auditing, research, and analysis to maintain, protect, and improve our service offerings, to enhance the Site, to identify usage trends, or to determine the effectiveness of our fundraising campaigns and/or individual fundraising campaigns;
• Informing future programs and services of the Fibrolamellar Cancer Foundation to guide future fibrolamellar cancer research and treatment efforts;
• Creating a profile based on the information you have provided;
• Ensuring the technical functions of our network;
• Developing new services; or
• Compiling personal information and other information collected through the Site on an aggregate basis.

IV. Personal Information We Share
We do not sell, rent, trade, or otherwise share personal information collected through the Site, except as described below:

• Subsidiaries and Affiliates. We may share personal information with our subsidiaries and affiliates for the purposes for which you provided the information or as reasonably necessary for our internal administrative and business purposes.
• Service Providers. We work with third parties that provide services on our behalf. Such services may include website hosting, marketing, data analysis, infrastructure provision, IT services, customer service, email delivery services, and website usage analytics. We may share personal information with these third parties for the purpose of enabling them to provide these services.
• Google Analytics. We may use Google Analytics to gather statistics on users of the Site. We will use the information gathered to improve web services. According to Google, Google Analytics employs cookies to define user sessions, which allows for the collection of important data about how users use the Site. Google Analytics uses only first-party cookies for data analysis. This means that the cookies are linked to the Site’s website domain(s), and Google Analytics will only use that cookie data for statistical analysis related to your browsing behavior through the Site. According to Google, the data collected cannot be altered or retrieved by services from other domains. If you choose, you can opt out by turning off cookies in the preferences settings in your browser. For more information on Google Analytics, please visit Google’s web site.
• Google Maps. This Site also allows users to access Google Maps, which includes a geolocation feature. The geolocation feature may be used to track information about your location. According to Google, the first time you use the geolocation feature on Google Maps, you will be asked to confirm that you wish to share your location with Google Maps, and you can always undo your decision. For more information on Google Maps, please visit Google’s web site.
• Third Party Payment Processors. If you make donations through the Site, we may share personal information with third parties who process payments on our behalf. Fibrolamellar Cancer Foundation is not responsible for the conduct of any third parties who process payments on our behalf, and we expressly disclaim all liability for damages of any kind arising out of the action or inaction of such third parties.
• Consent. We may share personal information in accordance with any consent you provide.
• Donor Lists. If you make a donation through the Site, we may include your name in our list of donors on the Site.
• Faces of Fibrolamellar Pages and Ambassador Pages. If you create a “Faces of Fibrolamellar” page on the Site, or submit pictures or information for the “Ambassador” pages, any information you provide will be automatically posted to the Site. This information may include your name, photographs, videos, and any other information you voluntarily provide.
• Fibrolamellar Forum. If you choose to become a member of our online community, Fibrolamellar Forum, any information you provide will be posted to the community. This information may include your name, location (city and country), relationship to FLC, photographs, videos, and any other information you voluntarily provide.
• Required by Law. We may disclose personal information if we are required to do so by law or pursuant to legal process, in response to a request from government officials or law enforcement authorities, or as necessary or appropriate in connection with an investigation of illegal activity.
• Certain Transactions. We may disclose or transfer personal information to third parties who acquire all or a portion of Fibrolamellar Cancer Foundation’s operations, whether such acquisition is by way of merger, consolidation, or purchase of all or a portion of our assets, or in connection with any bankruptcy or reorganization proceeding brought by or against us.

V. Aggregate Information
We may compile personal information and other information collected through the Site on an aggregate basis. This information may include, without limitation, demographic information about users of the Site. Such aggregate information does not identify you individually. We may use aggregate information and share aggregate information with third parties for any of the purposes specified above in this Privacy Policy, or for any other lawful purpose.

VI. Your Choices

• Information You Provide: You can always choose whether or not to provide information through the Site. However, if you choose not to disclose certain information, your access to certain portions of the Site may be limited. If you have previously agreed to share your personal information with us, you may change your preference(s) at any time by emailing us at info@fibrofoundation.org. If you believe that any information we are holding is incorrect or incomplete, please email us at info@fibrofoundation.org so that we can correct information according to your direction/instruction.
• Do Not Track: Our Site does not honor “do not track” signals or other mechanisms. You can configure your browser not to accept cookies or to notify you when a cookie is being sent.
• Faces of Fibrolamellar Pages and Ambassador Pages: The Site provides users the opportunity to provide information through “Faces of Fibrolamellar” page on the Site, or submit pictures or information for the “Ambassador” pages. Any information that you choose to upload through a “Faces of Fibrolamellar” or “Ambassador” page will become public information. This information may include your name, photographs, videos, and any other information you voluntarily provide. You are solely responsible for any such information you choose to upload to the Site, and you can always choose whether or not to provide information through a “Faces of Fibrolamellar” or “Ambassador” page. All information that is provided in a”Faces of Fibrolamellar” or “Ambassador” page may be viewed by other users of the Site and the general public (for example, through the use of Internet search engines or other Internet applications). Because information that may be uploaded through “Faces of Fibrolamellar” or “Ambassador” page may consist of sensitive health information, we urge you to carefully consider whether or not to upload such information, keeping in mind that once uploaded, this information may be viewed by any member of the public.
• Fibrolamellar Forum Pages: The Site provides users the opportunity to create a user profile in the the online community, Fibrolamellar Forum. You acknowledge and agree that any information that you choose to add to your profile or upload to the Fibrolamellar Forum section of the Site will become available to other users within Fibrolamellar Forum. This information may include your name, photographs, videos, and any other information you voluntarily provide. You are solely responsible for the content of any such information you choose to upload to Fibrolamellar Forum, and you can always choose whether or not to provide information through your profile page and to discussion topics within Fibrolamellar Forum. All information that is uploaded to a profile page or discussion topics may be viewed by other users of Fibrolamellar Forum, but is not viewable by the general public. Because information that may be uploaded to a profile or discussion topics may consist of sensitive health information, we urge you to carefully consider whether or not to upload such information, keeping in mind that once uploaded, this information may be viewed by other users.
• Communications From Us: If at any time you decide that you no longer wish to receive notices from us regarding the Site, you may indicate this preference by sending us an email at info@fibrofoundation.org or sending a letter via U.S. mail to:

• Updating Information: We encourage registered users of the Site to keep their personal information current. You may change personal information you have provided about you by sending us an email at info@fbrofoundation.org or sending a letter via U.S. mail to:

• Information Storage and Security: We employ reasonable security precautions to protect personal information about you. The Site is operated from a secure environment with integrated security measures to help protect against the loss, misuse, and alteration of personal information provided through the Site. These security measures include Secure Socket Layer (SSL) technology data transmission. However, no method of transmitting or storing data is completely secure. As a result, although we strive to protect personal information about you, we cannot guarantee the security of any information you transmit to us through or in connection with the Site. If you have reason to believe that personal information is no longer secure, please notify us immediately by contacting us in accordance with the last section below.
• A Note about Children: The Site is neither designed nor intended to attract children under the age of 13, and we do not collect personal information from any individual who we actually know is under the age of 13. We ask that children under the age of 13 not submit any personal information to us.

IX. External Links
The Site contains links to various websites that the Fibrolamellar Cancer Foundation does not control. When you click on one of these links, you will no longer be transacting business through the Site. Third party websites maintain their own privacy policies, and we do not exercise any control over any of the third party websites that may be linked to the Site. If you visit a website that is linked to the Site, you should consult that website’s privacy policy before providing any personal information. Please be aware that we are not responsible for the privacy practices of such other websites, and we are not liable for their misuse of personal information about you.

X. Special Admonitions for International Use
The owner of the Site is based in the State of Connecticut in the United States. Access to the Site may not be legal by certain persons or in certain countries. If you access the Site from outside the United States, you do so on your own initiative and are responsible for compliance with local laws. If you are located outside the United States and you contact us or provide information through the Site, please be advised that any information you provide to us will be transferred to the United States, and that by submitting information, you explicitly authorize such transfer.

XI. Updates to this Privacy Policy
We may change or update the Site or any of our policies and procedures without prior notice. We will post a notice on this Site to advise you of any significant changes to this Privacy Policy and indicate at the top of this statement when it was most recently updated. Your continued use of the Site signifies your continued assent to the terms of this Privacy Policy, as updated or amended at that time.

XII. Questions Regarding this Privacy Policy
If you have any questions or comments regarding this Privacy Policy, please send us an email at info@fibrofoundation.org or send a letter via U.S. mail to:

Fibrolamellar Cancer Foundation
20 Horseneck Lane
2nd Floor
Greenwich, CT 06830