II. Personal Information We Collect
A. Information You Give Us
DTRF is committed to adhering to the Digital Advertising Alliance self-regulatory principles (“DAA Principles”) that govern best practices for Interest-based and Internet-based advertising (“IBA”). Our use of IBA is described in more detail below. Consistent with DAA Principles, if you would like to opt-out from such third party data collection for use in IBA, please visit the Digital Advertising Alliance Consumer Choice Page at www.aboutads.info/choices.
Except for physical location information and tracking technologies (as described below), you do not have to give us any personal information to browse this Site. However, you may be asked to provide personal information to submit or request information from us, or to use the services offered through this Site. Once you provide us with your personal information, you are no longer anonymous to us. This information may include:
- Subscription Information: When you sign up for the Site, you are required to provide your email address. In addition, you may be asked to provide optional information, including your name and address including name, address, age and tumor location.
- Additional Information: Additional information that you provide to us, including through feedback, pictures you upload, messages, emails, posts to public discussion boards, event registrations, answers to surveys or questionnaires that you may submit.
B. Location Information.
In order to access and use certain areas or features of the Site, you consent to our collection and use of your physical location information if you use the Site on a location-enabled device (including GPS, cellular, and Wi-Fi networks) or from your browser.
C. Automated Information Collection.
In order to access and use certain areas or features of the Site, you consent to our collection and use of certain information about your use of the Site through the use of tracking technologies or by other passive means. Your consent to our access and use of 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 webpages you visited before and after visiting 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, you also consent to our servers automatically recording information that your browser sends whenever you visit a website. These server logs may include information such as your web request, IP address, browser type, browser language, the date and time of your request, your computer operating system, mobile device and mobile operating system, name of your internet service provider or your mobile carrier, and one or more cookies (small text files containing a string of characters) that may uniquely identify your browser. Our servers also automatically record what you click on while visiting the Site.
- Location Information. You consent to our receipt of location data passed to us from location-enabled devices or that you have enabled, from your browser, or from third-party services.
- Links. The Site may include links in a format that enables us to keep track of the IP addresses from which these links have been followed. You further consent to our collection and use this information to improve the quality of our Site, product(s) and DTRF business operations
- URLs. When you visit or access the Site, you consent to our receipt of the URL of the site from which you came and links you click on to leave the site.
- Web Beacons. Our Site may contain electronic images known as web beacons (also called single-pixel gifs and transparent graphic images) that we use to help deliver cookies on our sites, count users who have visited those sites, deliver services, and analyze the effectiveness of our promotional campaigns, for example. We may also include web beacons in our marketing email messages or newsletters to determine whether an email is opened or if links are clicked. You consent to our use of 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.
- Aggregate Information. We may compile certain personal information and other information collected through the Site on an aggregate basis. This information may include, without limitation, the number of people who have visited the Site and other user demographics. Such aggregate information does not identify you individually.
III. How We Use Personal Information
DTRF complies with its obligations under applicable privacy laws by: keeping personal data up to date where needed based on the purposes for which the personal data is being processed; by not collecting or retaining excessive amounts of data; by ensuring that appropriate technical measures are in place that are designed to protect personal data from loss, alteration, misuse, unauthorized access and disclosure as it is transmitted, stored, or otherwise processed, and by using appropriate measures to securely destroy personal data when it is no longer needed by DTRF.
Personal information collected through the Site may be used by us and our affiliates for purposes of:
- Responding to your questions and feedback;
- Providing the services you select through this Site;
- Contacting you, whether by email, postal mail, or telephone with information about this Site, our products, or our services;
- For such purposes as you may authorize at the time you submit the information;
- Auditing, research, and analysis to maintain, protect, and improve this Site and our services;
- Ensuring the technical functions of our network;
- Improving and customizing the content and layout of the Site;
- Developing new products and 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:
- In Connection with our Offerings. The Site involves the sharing of certain personal information collected through the Site with (i) other users of the Site, and (ii) as you otherwise provide your consent. Information which you upload, post, e-mail, submit or otherwise transmit in connection with the Site to a public message board, chat area or other public area of the Site will be made public to users of the Site, including certain metadata related to such activities (such as timestamps). You are solely responsible for any such information you choose to post on or through the Site. All information that is posted to a message board, chat area, or other public area of the Site may be shared by us with (i) other users of the Site, and (ii) as you otherwise provide your consent. Please be aware that anything you share publically may be further shared by other users of the Site (for example, by emailing a screenshot of your post to non-users. We are not responsible for any such sharing of information you have shared publically on the Site.
- 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, and website usage analytics. We may share personal information and non-personal information with these third parties for the purpose of enabling them to provide these services.
- Consent. We may share personal information in accordance with any consent you provide.
- Required by Law. We may disclose personal information or any information collected through this Site 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 or any information collected through this Site to third parties who acquire all or a portion of our business, 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.
- Internet Based Advertising. We may participate in Interest-based and interest-based advertising. This means that you may see advertising on the Site tailored to how you engage or browse, or you may see advertising for us on other websites, applications and social media based on your behavior across websites, applications and social media. We may target ads based on data we have collected, or data provided by third parties alone or in combination with the data we collect ourselves. If you choose to interact with specific third parties who advertise through the Site, the information you provide to them is subject to the conditions of their specific privacy policies.
V. Aggregate Information
VI. Your Choices
A. Information You Provide
You can always choose whether or not to provide information on the Site. However, if you choose not to disclose certain information, you may not be able to register as a user of the Site, which may limit your access to certain portions of the Site.
B. 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 contacting us at firstname.lastname@example.org.
C. Do Not Track
D. Your Rights and Your Personal Data
Unless subject to an exemption under the GDPR, if your personal data is subject to the GDPR, you have the following rights with respect to your personal data:
- The right to request a copy of your personal data which the DTRF holds about you;
- The right to request that the DTRF correct any personal data if it is found to be inaccurate or out of date;
- The right to request your personal data be erased where it is no longer necessary for DTRF to retain such data;
- The right to withdraw your consent to the processing at any time of personal data to which you provided consent for processing;
- The right to request that DTRF provide you with a copy of your personal data and where possible, to transmit that data directly to another data controller (known as the right to data portability);
- The right, where there is a dispute in relation to the accuracy or processing of your personal data, to request a restriction be placed on further processing;
- The right to object to the processing of personal data (where applicable); and
- The right to lodge a complaint with a data supervisory authority.
E. Transfer of Data Abroad
If your personal data is subject to the GDPR, DTRF will transfer personal data from the European Economic Area (EEA) to a location outside the EEA only when there has been a documented adequacy determination, or where DTRF has confirmed adequate privacy protections. If DTRF transfers personal data to a third party acting as an agent of DTRF, we will also obligate the third party to have adequate privacy protections in place.
DTRF may transfer personal data to and on behalf of clients and third party’s with whom DTRF has an existing service agreement or as part of our legal obligations, each of which shall be subject to DTRF policies, and only to the extent necessary for purposes of legitimate interests pursued by the data controller (or by a third party).
F. Automated Decision Making
Under the GDPR, data subjects have the right not to be subject to a decision based solely on automated processing, including profiling, which produces legal effects concerning him or her, or similarly significantly affects him or her, as long as the decision (1) is not is necessary for entering into, or the performance of, a contract between the data subject and a data controller, or (2) is not authorized by Union or Member State law to which the controller is subject and which also lays down suitable measures to safeguard the data subject’s rights and freedoms and legitimate interests, or (3) is not based on the data subject’s explicit consent. We do not engage in automated decision making.
G. Further processing
VII. Information Storage and Security
We employ reasonable security precautions to help protect against the loss, misuse, and alteration of personal information provided on or through the Site. 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.
VIII. A Special Note about Children and California Residents
Children are not eligible to use the Site, and we ask that minors (children under the age of 18) not submit any personal information to us. If you are a minor, you can use the Site only in conjunction with your parents or guardians.
IX. External Links
X. Special Admonitions for International Use
The Site is hosted in Connecticut, U.S.A. All matters relating to the Site are governed exclusively by the laws of the State of Connecticut, U.S.A., and not the jurisdiction in which you are located. If you are located outside of the United States of America and you contact us, please be advised that any information you provide to us will be transferred to the United States of America and that by submitting information, you explicitly authorize such transfer.
If your personal data is subject to the GDPR, the data controller for the purposes of GDPR or other data protection laws applicable in Member states of the European Union and other provisions related to data protection is:
Desmoid Tumor Research Foundation
PO Box 273
Suffern, NY 10901
Any data subject may, at any time, contact us directly with any questions and suggestions concerning data protection. We encourage interested persons to raise any concerns about the collection, use, or processing of personal data using the contact information provided above. In the event of a privacy related issue or complaint, we will investigate and attempt to promptly resolve any complaints and disputes regarding use and disclosure of personal data.
For complaints that cannot be resolved, if your personal data is subject to the GDPR, we commit to cooperating with the panel established by the EU data protection authorities (DPAs) or the Swiss Federal Data Protection and Information Commissioner (FDPIC), as applicable, and comply with the advice given by the DPAs or FDPIC about personal data transferred from the EU or Switzerland.
In order to facilitate the handling of complaints, individuals in the EU can choose to contact their national DPA or use the form located at this link:
Individuals in Switzerland can contact the Swiss FDPIC by visiting:
This independent dispute resolution process is provided at no cost to the individual.