FORBIE (“FORBIE”) is a patient/scientist nonprofit that seeks to:
(a) bring together information about cancer
(b) accelerate our understanding of cancer by globally sharing de-identified and anonymized data about cancer
(c) empower people with cancer
(d) give everyone a better understanding of the global where, when, and what of cancer

We are passionately committed to protecting your privacy.
This Privacy Policy describes how FORBIE protects and uses your Data (as defined below) we collect on our website, located at FORBIE.COM, our mobile application (“Application”), and our widgets (collectively, the “Site”).

FORBIE is not a covered entity or business associate of a covered entity as defined in the Health Insurance Portability and Accountability Act of 1996 (HIPAA). FORBIE does not create, receive, maintain, transmit, or share Protected Health Information (PHI) as defined in HIPAA. This means that the information that you provide to FORBIE is not protected by HIPAA.

FORBIE does not share Personal Data (defined below) except in very limited circumstances such as to comply with a court order or court-ordered warrant, a subpoena or summons issued by a judicial officer, or a grand jury subpoena. FORBIE follows industry practices regarding the transmission, storage, and encryption of Personal Data.

1. Questions

Contacting FORBIE; Reporting Violations.
If you have any questions or concerns or complaints about our Privacy Policy or our data collection or processing practices, or if you want to report any security violations to us, please contact us at support @

2. User Consent

By submitting data through our Site or Application, you agree to the terms of this Privacy Policy and you expressly consent to the collection, use, and disclosure of your data in accordance with this Privacy Policy.

3. Definition of Data Types FORBIE Collects

“Personal Data” refers to data that allow someone to identify or contact you, including, for example, your name, address, telephone number, e-mail address, as well as any other non-public information about you.

  1. Basic Site Usage. You can browse our Site without telling us who you are or giving us any Personal Data (defined above) about yourself. When you interact with us through your computer, our Site records certain non-identifying site usage data.
  2. Information You Can Choose to Contribute to FORBIE. If you join our Site you may voluntarily choose to provide Personal Data about yourself such as your name, contact information, and whether you have cancer. If you provide us feedback or contact us via e-mail, we will collect your name and e-mail address, as well as any other content included in the e-mail, so that we can reply to your email.
  3. Information You Provide to Facebook and other Social Networking Sites(“SNS”). The Site allows users to post messages to their Facebook feeds and send Tweets. Any information that we collect from your SNS account may depend on the privacy settings you have with that SNS, so please consult the SNS’s privacy and data practices. You acknowledge and agree that you are solely responsible for your use of those websites and that it is your responsibility to review the terms of use and privacy policy of the third party provider of such SNSs. We will not be responsible or liable for: (i) the availability or accuracy of such SNSs; (ii) the content, products or services on or availability of such SNSs; or (iii) your use of any such SNSs.
  4. Health, Fitness, Photos, Video and Audio Data Collected via Application.  When you use our Application you have the option to write to Journals, Surveys, Symptoms and provide access to a fitness tracking device.  The Application may store your health, Fitness, Photos, Video or Audio data for the purpose of reviewing this data on your own or with a clinician to avoid recall bias.
  5. Information Collected via Technology. When you visit the Site or Application, our web servers automatically collect limited information about your computer including the following:
    Information Collected by Our Servers. To make our Site more useful to you, our servers (which may be hosted by a third party service provider) collect information from you, including your browser type, operating system, Internet Protocol (“IP”) address (a number that is automatically assigned to your computer when you use the Internet, which may vary from session to session), domain name, and/or a date/time stamp for your visit.
  6. Log Files. As is true of most websites, we gather certain information automatically and store it in log files. This information includes IP addresses, browser type, Internet service provider (“ISP”), referring/exit pages, operating system, date/time stamp, and clickstream data. We use this information to analyze trends, administer the Site, and better tailor our Site to our users’ needs. Except as noted in this Privacy Policy, we do not link this automatically-collected data to Personal Data.
  7. Cookies. Like many online services, we use cookies to collect information. “Cookies” are small pieces of information that a website sends to your computer’s hard drive while you are viewing the website. We may use both session Cookies (which expire once you close your web browser) and persistent Cookies (which stay on your computer until you delete them) to provide you with a more personal and interactive experience on our Site. This type of information is collected to make the Site more useful to you and to tailor the experience with us to meet your interests and needs.

>4. Data Use

Personal Data. We use your Personal Data (such as your name) to administer the site and to respond to requests that you make (such as when you email us). We also use your Personal Data to, for example, show you your cancer timeline.
De-identified and Anonymized Data (“DAD”). A big part of FORBIE is the global sharing of “De-identified and Anonymized Data” (DAD) about cancer. DAD are not linked to individuals and are further anonymized by omitting and/or obscuring information. DAD do not, by themselves, permit the identification of individual persons. We create DAD from your Personal Data by excluding information such as your name, contact information, specific age, specific diagnosis, specific location, and specific date, that make, or could make, the data personally identifiable to you.

We can also make your de-identified and anonymized data available for future use by anyone in the world. If you do not want us to make your de-identified and anonymized data available for future use, change your settings at SETTINGS: Privacy. If you want us to permanently delete all the data you gave us, select the SETTINGS: Delete Account option. When you select this option, we will delete the data you gave us from our servers.

Please keep in mind that there is no way to “unshare” your de-identified and anonymized data once it has left our servers. It’s like sending a Tweet – once you have sent the Tweet, it will live forever on the internet. Likewise, once you have shared your Anonymous Data packet, it will live forever on the internet, where it can be seen and used by anyone who wants to (scientists, teachers, writers, journalists, artists, and everyone else).

5. Disclosure of Your Personal Data.

FORBIE may have to disclose Personal Data (such as your name) if it believes in good faith that such disclosure is necessary (a) in connection with any legal investigation; (b) to comply with relevant laws or to respond to subpoenas or warrants served on FORBIE; (c) to protect or defend the rights or property of FORBIE or users of the Site or Site; (d) to provide your clinical care professional access to your survey, journal results and/or (e) to investigate or assist in preventing any violation or potential violation of the law, this Privacy Policy, or our Terms of Use.

6. Third Party Websites.

Our Site may contain links to third party websites. When you click on a link to any other website or location, you will leave our Site and go to another site, and another entity may collect Personal Data or Anonymous Data from you. We have no control over, do not review, and cannot be responsible for, these outside websites or their content. Please be aware that the terms of this Privacy Policy do not apply to these outside websites or content, or to any collection of your Personal Data after you click on links to such outside websites. We encourage you to read the privacy policies of every website you visit. The links to third party websites or locations are for your convenience and do not signify our endorsement of such third parties or their products, content or websites.

7. Your Choices Regarding Information.

You have several choices regarding the use of information on our Site:

  1. Email Communications. If you choose to provide your e-mail information and ask us to inform you about e.g. cancer incidence trends, we will do so once there is enough data. When you receive communications from us, you may indicate a preference to stop receiving further communications from us and you will have the opportunity to “opt-out” by following the unsubscribe instructions provided in the e-mail you receive or by contacting us directly (please see contact information below). Despite your indicated e-mail preferences, we may send you service related communications, including notices of any updates to our Terms of Use or Privacy Policy.
  2. Cookies. If you decide at any time that you no longer wish to accept Cookies from our Site for any of the purposes described above, then you can instruct your browser, by changing its settings, to stop accepting Cookies or to prompt you before accepting a Cookie from the websites you visit. Consult your browser’s technical information. If you do not accept Cookies, however, you may not be able to use all portions of the Site or all functionality of the Site. If you have any questions about how to disable or modify Cookies, please let us know at the contact information provided below.
  3. De-Linking SNS. If you decide at any time that you no longer wish to have your SNS account linked to your account, you have the option to close your FORBIE account by clicking SETTINGS: Delete Account. Please refer to the privacy settings of the SNS to determine how you may adjust our permissions and manage the interactivity between the Site and your social media account or mobile device.
  4. Changing or Deleting Your Personal Data. You may change the cancer data you contributed to by going to the GIVE DATA page and changing your answers, and the clicking “Save”. You always have the option of deleting your account and deleting the data you contributed from our servers by clicking SETTINGS: Delete Account.
  5. Applications. You can stop all collection of information by the Application(s) by uninstalling the Application(s). You may use the standard uninstall processes as may be available as part of your mobile device or via the mobile application marketplace or network.

8. A Note About Children

We do not intentionally gather Personal Data from visitors who are under the age of 13. If a child under 13 submits Personal Data to FORBIE and we learn that the Personal Data is the information of a child under 13, we will attempt to delete the information as soon as possible. If you believe that we might have any Personal Data from a child under 13, please contact us at support @

9. A Note to Users Outside of the United States

If you are a non U.S. user of the Site, by visiting the Site and providing us with data, you acknowledge and agree that your Personal Data may be processed for the purposes identified in the Privacy Policy. In addition, your Personal Data may be processed in the country in which it was collected and in other countries, including the United States, where laws regarding processing of Personal Data may be less stringent than the laws in your country. By providing your data, you consent to such transfer.

10. Security of Your Personal Data

FORBIE is committed to protecting the security of your Personal Data. We use a variety of industry-standard security technologies and procedures to help protect your Personal Data from unauthorized access, use, or disclosure. We also require you to enter a password to access your account. Please do not disclose your Account password to unauthorized people. No method of transmission over the Internet, or method of electronic storage, is 100% secure, however. Therefore, while FORBIE uses reasonable efforts to protect your Personal Data, FORBIE cannot guarantee its absolute security.

11. Changes to This Privacy Policy

This Privacy Policy may be updated from time to time for any reason. We will notify you of any changes to our Privacy Policy by posting the new Privacy Policy here and we will change the “Last Updated” date above. You should consult this Privacy Policy regularly for any changes.