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Website Privacy Policy

Last updated: July 14, 2026

Draft for attorney review. This document was adapted from a peer organization's published policies as a starting template. It is not legal advice. Have a licensed attorney review and finalize it before publishing, and replace every [bracketed] placeholder with The SFT Foundation's actual details.

1. Scope of this Privacy Policy

This Privacy Policy describes the types of personal information The SFT Foundation ("The SFT Foundation," "we," "us," or "our") collects through https://curesft.org [and any additional domains operated by the Foundation] (collectively, the "Site"). This Privacy Policy does not govern our collection of personal information through any website or other means other than through the Site.

Our processing of personal information, such as your name, address, e-mail address, or telephone number, shall be undertaken consistent with the requirements of the General Data Protection Regulation ("GDPR") and other applicable privacy laws. The purpose of this Privacy Policy is to provide users and potential users of our website with information about the nature, scope, and purpose of the personal information we collect, use, and process, and to advise data subjects of their rights. Whether as the data controller or processor, The SFT Foundation has implemented technical and organizational measures to protect personal information processed through this website. However, Internet-based data transmissions may in principle have security gaps, so absolute protection may not be guaranteed.

By using the Site, you accept and consent to our practices surrounding the collection, use, and sharing of personal information as described in this Privacy Policy. If you do not agree with the terms of this Privacy Policy, you cannot access, browse, or use the Site.

2. Personal Information We Collect

A. Actively Collected Information

This Site offers users the ability to learn about The SFT Foundation and to support its mission — for example, by donating, subscribing to updates, hosting or joining a fundraiser, or sharing their story through the Site.

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 (including a personal story, testimonial, photograph, or video), or use the services offered through this Site, and by doing so you consent to our processing of such information as described in this Privacy Policy. This information may include your full name, e-mail address, postal address, other demographic information, location, photographs, videos, your relationship to solitary fibrous tumor (SFT) (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 donate to The SFT Foundation through the Site, you may be required to provide personal information including your full name, billing address, e-mail address, telephone number, and payment card information (card number, expiration date, CVV, and card type), as well as other financial information necessary to process your payment. You may also be asked to indicate whether your employer will match your donation, whether your estate plan provides for The SFT Foundation, and your relationship to SFT.

B. Passively Collected Information

In order to access and use certain areas or features of the Site, you consent to our collection of certain information about your use of the Site through tracking technologies or other passive means, including the use of Google Analytics or similar programs. You consent to our access and use of this "passively collected" information, including the domain name of the website that referred you to the Site, search engines used, the IP address used, the length of time spent on the Site, the pages you viewed, other websites you visited before and after the Site, your browser type, the frequency of your visits, and other relevant statistics, including the following:

  • Log Information. When you access the Site, our servers automatically record information that your browser sends, which may include your web request, IP address, MAC address, computer type, operating system version, browser type and version, browser language, the date and time of your request, and one or more cookies that may uniquely identify your browser. We use this information to calculate Site usage levels, diagnose server problems, administer the Site, and improve its quality.
  • Links. The Site may include links in a format that enables us to keep track of whether these links have been followed. We use this information to improve the quality of the Site design.
  • Cookies. When you visit the Site, you consent to us sending one or more cookies to your device to uniquely identify your browser and to improve the quality of the Site by storing user preferences and tracking user trends. Most web browsers accept cookies automatically but can be configured not to. 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") allow us to count the number of users who have visited the Site, recognize users by accessing our cookies, compile aggregate statistics about Site usage and response rates, and determine which HTML-formatted e-mail messages were opened.

3. How We Use Personal Information

The SFT Foundation complies with its obligations under GDPR by keeping personal information up to date where needed; by not collecting or retaining excessive amounts of data; by ensuring appropriate technical measures are in place to protect personal information from loss, alteration, misuse, unauthorized access, and disclosure; and by using appropriate measures to securely destroy personal information when it is no longer needed. You consent to our use of the personal information collected through the Site for purposes of:

  • Processing donations made through the Site;
  • Creating a list of donors who have contributed to The SFT 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, or to conduct surveys;
  • Sharing your story, testimonial, photographs, or videos in accordance with the permission you provide at the time of submission, for awareness, educational, and fundraising purposes;
  • Auditing, research, and analysis to maintain, protect, and improve our services and to determine the effectiveness of our campaigns;
  • Ensuring the technical functions of our network and developing new services; and
  • Compiling personal information and other information collected through the Site on an aggregate basis.

4. 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 as website hosting, marketing, data analysis, IT services, email delivery, payment processing, and website usage analytics. We may share personal information with these third parties for the purpose of enabling them to provide these services.
  • Analytics. We may use Google Analytics or similar tools to gather statistics on users of the Site and improve our web services. You can opt out by turning off cookies in your browser preferences.
  • 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. The SFT Foundation is not responsible for the conduct of such third parties and expressly disclaims liability for damages arising out of their action or inaction.
  • Consent. We may share personal information in accordance with any consent you provide.
  • Donor Lists. If you donate through the Site, we may include your name in our list of donors on the Site.
  • Public Story Submissions. If you submit a story, testimonial, photograph, or video and grant us permission to publish it, that content — which may include your first name, location, relationship to SFT, and images — may be posted publicly on the Site and used in our publications and communications. Because such submissions may consist of sensitive health information, we urge you to consider carefully what you choose to share, keeping in mind that once published, it may be viewed by any member of the public.
  • Required by Law. We may disclose personal information if required to do so by law or legal process, in response to a request from government officials or law enforcement, or as necessary 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 The SFT Foundation's assets, whether by merger, consolidation, or otherwise, or in connection with any bankruptcy or reorganization proceeding.

No mobile information will be shared with third parties or affiliates for marketing or promotional purposes. All other categories exclude text messaging originator opt-in data and consent; this information will not be shared with any third parties.

5. Aggregate Information

We may compile de-identified personal information and other information collected through the Site on an aggregate basis, which may include demographic information about users of the Site. Such aggregate information does not identify you individually. We may use and share aggregate information with third parties for any of the purposes specified in this Privacy Policy or for any other lawful purpose.

6. Your Choices

A. 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.

B. 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.

C. Public Story Submissions

The Site provides users the opportunity to submit stories, testimonials, photographs, and videos. You acknowledge and agree that any such content you choose to submit and authorize us to publish may become public information and may be viewed by other users of the Site and the general public. You are solely responsible for the content you choose to submit. Because such content may consist of sensitive health information, we urge you to carefully consider whether to submit it, keeping in mind that once published, it may be viewed by any member of the public.

D. 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 emailing us at [contact email] or by sending a letter via U.S. mail to: The SFT Foundation, [mailing address].

E. Updating Information

We encourage registered users of the Site to keep their personal information current. You may request to change personal information you have provided by emailing us at [contact email] or by sending a letter via U.S. mail to: The SFT Foundation, [mailing address].

F. Your Rights and Your Personal Information

If you are an EU resident, by law you may have the following rights with respect to your personal information:

  • The right to request a copy of the personal information The SFT Foundation holds about you;
  • The right to request that we correct any personal information found to be inaccurate or out of date;
  • The right to request that your personal information is erased where it is no longer necessary for us to retain it, or where you have exercised your right to object to processing;
  • The right to withdraw your consent to processing at any time where you previously provided consent;
  • The right to request that we provide your personal information in a commonly used format and, where possible, transmit it to another data controller (data portability);
  • The right, where there is a dispute regarding the accuracy or processing of your personal information, to request a restriction on further processing;
  • The right to object to the processing of personal information (where applicable); and
  • The right to lodge a complaint with a data supervisory authority.

If you want to exercise any of the rights described above, please contact us using the contact details below. Typically you will not have to pay a fee, though we may charge a reasonable fee or refuse to comply if a request is clearly unfounded, repetitive, or excessive. We may need to request specific information from you to confirm your identity. We try to respond to all legitimate requests within one month; if a request is particularly complex, it may take longer, and we will notify you.

G. Transfer of Data Abroad

The SFT Foundation will transfer personal information abroad only when there has been a documented adequacy determination, or where The SFT Foundation has confirmed adequate privacy protections. If we transfer personal information to a third party acting as our agent, we will require that third party to have adequate privacy protections in place, and only to the extent necessary for purposes of legitimate interests pursued by the data controller or a third party.

H. Further Processing

If we wish to use your personal information for a new purpose not covered by this Privacy Policy, we will provide you with a new notice explaining this use prior to commencing the processing, and, where necessary, seek your prior consent.

7. 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, including Secure Socket Layer (SSL) technology for data transmission, to help protect against the loss, misuse, and alteration of personal information provided 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. If you have reason to believe that personal information is no longer secure, please notify us immediately using the contact information below.

8. A Special 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.

9. External Links

The Site contains links to various websites that The SFT 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 them. If you visit a linked website, you should consult that website's privacy policy before providing any personal information. We are not responsible for the privacy practices of such other websites and are not liable for their misuse of personal information about you.

10. Special Admonitions for International Use

The owner of the Site is based in the State of Illinois 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 will be transferred to the United States, and that by submitting information, you explicitly consent to and authorize such transfer.

11. 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.

12. Questions Regarding this Privacy Policy

The Data Controller for the purposes of GDPR or other applicable data protection laws is The SFT Foundation. Any data subject may contact us at any time with questions or suggestions concerning data protection. If you have any questions or comments regarding this Privacy Policy, please email us at [contact email] or send a letter via U.S. mail to: The SFT Foundation, [mailing address].