Last Updated: 1/2/2024 Privacy Policy Version: 6.1
The Musella Foundation For Brain Tumor Research & Information, Inc is committed to responsible information handling practices. You can visit most pages on our websites (as defined below) without giving us any information about yourself, but sometimes we need your information to provide services that you request. This Privacy Policy explains data collection and use in those situations. By visiting our websites, you consent to the information practices described in this Privacy Policy.
This Privacy Policy applies to the following sites (as well as subdomains of these websites):
We have no control over the websites we link to, so this Privacy Policy does not apply when you follow a link off of one of our websites.
This policy is subject to change.
We are located in the USA. Our services and content are intended only for USA residents. The information might not apply outside of the USA and we do not have the resources to serve patients outside of the USA.
For Donors to our organization: We collect your name, contact information and possibly your relationship to brain tumors. We do not collect your credit card information. This information is used internally and is never shared or sold to any other person or organizations. We may send you a mailing at least once a year telling you of our accomplishments and requesting another donation. You can easily opt out by telling us to remove your name from our mailing list. If you do not want us to add you to the mailing list when you make a donation, in the comment section say 'Do not add me to the mailing list'.
For participants in the Virtual Trial project: We collect your detailed medical information including: You and your contact person's name and contact information, your doctor's name and contact information, as well as your diagnosis, treatment history and medical reports. We are in a collaboration with xCures and Cancer Commons to help analyze the data. We will share your information with them. None of these organizations will sell or share your personal data but might sell or share or publish the depersonalized analysis of all patients.
For visitors to our website: If you voluntarily fill out a form, we will collect the information from that form. That information will be used for the intended purposes of the form and will not be shared or sold to any other person or organization. For example, if you order a "Guide For The Newly Diagnosed", we will use your contact information to mail you a copy of the guide - but you will not be put on a mailing list.
Certain information will be collected from all visitors to any of our websites listed above.
Your web browser will automatically send and we may retain information such as:
Cookies: We use cookies to customize your user experience and to allow us to tell if you already agreed to the privacy policy or not.
Google Analytics: We use a tool called "Google Analytics" to collect information about use of this site. Google Analytics collects information such as how often users visit this site, what pages they visit when they do so, and what other sites they used prior to coming to this site. We use the information we get from Google Analytics only to improve this site. Google Analytics collects only the IP address assigned to you on the date you visit this site, rather than your name or other identifying information. We do not combine the information collected through the use of Google Analytics with personally identifiable information. Although Google Analytics plants a permanent cookie on your web browser to identify you as a unique user the next time you visit this site, the cookie cannot be used by anyone but Google. Google's ability to use and share information collected by Google Analytics about your visits to this site is restricted by the Google Analytics Terms of Use (as amended for government websites) and the Google Privacy Policy. You can prevent Google Analytics from recognizing you on return visits to this site by disabling cookies on your browser or visit in an incognito window.
The reports we get do NOT show your name or provide any way that we could tell who you are. They just show us aggregate information such as how our visitors got to our website, what browser they use, general location, and the language used. There is no way to opt out of this tracking. If you do not wish to allow it just set your browser to block cookies or use an incognito window.
Credit Card Policy: (updated 1/2/24) When you use a credit card on any of our websites (see list of websites above), we use a secure connection to the PayPal Credit Card Processor to complete the transaction immediately. At no time do we save your credit card number, expiration date or security code. No employees or volunteers of our organization can even see your credit card information. Paypal will have access to your name, contact information and credit card information. Check their privacy policy to see how they may use it: https://www.paypal.com/us/webapps/mpp/ua/privacy-full Do not make a credit card donation or purchase on our website if you do not accept PayPal's privacy policy!
If you make a credit card donation by mail, we will process the credit card donation and then shred the paperwork with the credit card number - so a person will see the credit card numbers but we do not record the credit card numbers. Both online and by mail credit card donations are safe, but if you are concerned about privacy, make the donation on the website and we have no way of ever seeing the credit card number.
We may keep information we collect forever.
Right To Be Forgotten: You may request that we delete all identifiable information that we have on you at any time.
You can also request that we send you a copy of all of the data that we have about you: For the Virtual Trial Project - you can also print this report yourself from the Virtual Trial menu. The only other data we collect is about donations. You can request a list of the donations you made or the donations made in your honor.
IF we are compelled to divulge your information by law enforcement, we will
All of our services are free to you, including: our extensive video library, our "Guide for the newly diagnosed brain tumor patient", online support groups, extensive library of original articles, brain tumor news blast, toll free patient help line, co-payment assistance program, drug discount card program and much more.
These programs cost a lot of money to provide to you. We (the executive board of the Musella Foundation For Brain Tumor Research & Information, Inc) have decided to accept sponsorships and advertising on our website and newsletters to offset these costs, instead of charging you for this potentially life saving information. Our thoughts are that our efforts can help the most people if it is free to them, so we accept advertising and sponsorship.
Most, or all, of income from sponsorship and advertising comes from the companies that make products needed by the brain tumor community. Sponsorship is in the form of unrestricted educational grants. These companies are acknowledged on our sponsors page. There are policies in place to prevent any influence of the sponsors on the editorial content of this website.
We reserve the right to reject any advertising that is against our mission and will not accept any advertising that we feel is not in the best interest of brain tumor patients. The appearance of an advertisement on virtualtrials.org (or in our newsletters or support groups) is not an endorsement of the sponsor. We are not responsible for the content of the ads. We suggest that you look at the ads and if the product or service looks good to you, bring it to your doctors and discuss it with them. Our main purpose is to give you the information you need to find and understand the options - not to make the decisions for you.
All advertising on the site is will be clearly identified as advertising and is kept separate from editorial content - always enclosed in a box that says SPONONSORED BY or SPONSORED LINKS. .
We make every effort to provide you with balanced, responsible, encouraging, and thorough information. All content has been reviewed by health care professionals. In some cases, articles are written by non-professional patient advocates - these articles are always reviewed by a health care professional before being posted on our website. The only exception to this rule is the survivor stories - which are written by the brain tumor patient or caregiver. We feel that it is not appropriate to change their words and those articles are the opinion of the writer alone and do not reflect the opinions of our foundation.
We maintain complete editorial independence and separation from advertisers and sponsors at the site. None of the content is screened, altered, or edited by sponsors at any time.
If you purchases something from us, we will ship it within 1 week, with the exception of tickets which we usually (check event page for details) ship a few days before the event. If you need something in a hurry - call us before ordering and we can tell you if it is possible to ship it immediately!