I. Scope of this Privacy Policy
This Privacy Policy describes the types of personal information the Desmoid Tumor Research Foundation (“DTRF,” “us,” “we” or “our”) collects through www.DTRF.org (the “Site”), and how we collect, use, and share that information. This Privacy Policy does not govern our collection of personal information through any other website or other means, other than through the Site.
Our processing of personal data, such as your name, address, e-mail address, or telephone number, shall be undertaken consistent with the requirements of applicable privacy laws, including, but not limited to, the General Data Protection Regulation (“GDPR”). The purpose of this Privacy Policy is to provide to users and potential users of our website information about the nature, scope, and purpose of the personal data we collect, use and process and to advise data subjects of their rights. Whether we serve as the data controller or processor, DTRF has implemented numerous technical and organizational measures to ensure the protection of personal data processed through the Site. However, Internet-based data transmissions may in principle have security gaps, so please understand that absolute protection is not assured.
By using the Site, you accept and expressly agree to 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, you cannot, and we do not authorize you to, access, browse, or use the Site.
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, 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 web pages 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 of 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.
Cookies. When you visit or access the Site, you consent to our use of one or more cookies (small text files containing a string of characters) to your computer that uniquely identifies your browser. We use cookies to improve the quality of the Site by storing user preferences, tracking user trends, and providing personalized content and ads. 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 available through the Site. See more information on our Cookie Policy, including an opt-out.
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.
- 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:
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 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.
By using the Site you agree to usage tracking. If you do not wish to have cookies track your usage for these purposes, please visit our Cookie Policy at for information regarding how to refuse all or some browser cookies, or do not use the Site. For additional assistance with opting-out, please contact us directly at info@dtrf.org.
V. Aggregate Information
We may compile de-identified personal information and other information collected through the Site on an aggregate basis. This information may include, without limitation, the number of users who have registered for the Site and 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 in this Privacy Policy, and for any other lawful purpose.
VI. Your Choices
A. 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 info@dtrf.org.
B. Do Not Track
As described in more in our Cookie Policy, you can configure your browser not to accept cookies or to notify you when a cookie is being sent.
C. 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 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.
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.
IX. External Links
The Site may contain links to various websites that we do 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. 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 via the “Last Updated” legend in this Privacy Policy when it was most recently updated. Except to the extent that your express consent to any change or update is required under data protection law, your continued use of the Site signifies your continued assent to the terms of this Privacy Policy, as updated or amended at that time.
XI. Questions Regarding this Privacy Policy
If you have any questions or comments regarding this Privacy Policy, please send us an email at info@dtrf.org.
The Desmoid Tumor Research Foundation
c/o CliftonLarsonAllen LLP
50 Tice Blvd, Suite 175
Woodcliff, NJ 07677
Email: info@dtrf.org
