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National Brain Tumor Society


Effective as of January 2013

Read the NBTS Terms and Conditions of Use

Our Commitment to Privacy

National Brain Tumor Society (“NBTS”) respects the privacy of every individual who visits our websites, including braintumor.org, and braintumorcommunity.org (“Website”). This notice explains our online information practices. Because your privacy is important to us, we provide you with notice and choices about the collection and use of your information. To make this notice easy to find, links are provided at the bottom of our homepage and on every page within our Website. Additionally, each page that requests personally identifiable information reminds you of the importance of your privacy and provides a link to the privacy policy. By visiting an NBTS Website, you accept the practices described in this Privacy Notice. By visiting an NBTS Website and/or creating a profile (each a “NBTS Website”) or otherwise using our online services you are agreeing to comply with and be bound by theseTerms of Use. If you do not agree to these Terms of Use, you may not access or use our online services.

NBTS will not sell, trade, or share your personal information obtained the personal information you provide to us through our website(s) , direct mail or mailed-in donations, verbally, or any other online or offline means or methods - with anyone outside of NBTS staff and Board  - without your consent - else, nor will NBTS send donor mailings or emails on behalf of another organization without your written permission to do so.

Use of Cookies

We use cookies, small files that are sent to your Web browser and stored on your computer's hard drive, to improve your Website experience. The cookie is used to speed up your access to the Website and the information you wish to see, but it does not contain any personal information. The majority of Web browsers accept cookies, but the “help” menu on your browser should give you options for preventing, accepting, or receiving notice of new cookies. However, please be aware that if you block cookies, some Website functionality may be lost.

Data Collection
We collect several types of information:

1. Standard Web server traffic pattern information. General traffic, site usage, browser information, and length of stay information is collected and stored in log files. This type of information is shared externally only on an aggregated basis.

2. Personal information. We do not collect personally identifiable information from you unless you provide it to us voluntarily and knowingly. If you personalize a Website, become a volunteer, order materials, request information, or donate, for example, we may collect the following information: first and last name, street address, city, state, zip code, telephone number, email address, and subject of inquiry. Personal information may be needed for certain optional online activities.

3. Registration: If you choose to create a profile to personalize the Website (braintumorcommunity.org) to your needs by becoming a registered Web user, we retain the preferences you select so that you will not have to reenter the information each time you access our Website. You can access your profile by entering your username and password each time you use the Website. When you register and create a profile, we may ask you to provide health information. This information is useful for event administration purposes. Further, if you elect to use our referral service to inform a friend about the site, we will ask you for your friend’s name and address. We will store this information in order to send your friend a one-time email inviting him or her to visit the site.

4. Contributions: If you choose to donate to our organization, we maintain a record of your contribution. We collect standard credit card information (card number, card type, expiration date) and keep a record of your financial transaction. Credit card numbers are held only until the charge can be processed (usually several minutes) then the number is only available to NBTS Gift Processing for purposes of problem resolution.

5. Requests: If you submit an online request for NBTS products such as free brochures, or submit a question through a “contact us” query, we may have to gather additional information from you to respond to your request. Such information will vary with the request but often includes name, address, telephone number, and email address.

6. Public Forums: If you choose to participate in a chat room, discussion board, news group, or another public forum that we make available to our users, please remember that any information that you disclose in these areas becomes public information, even when these forums are password protected. You should exercise caution when deciding whether or not to disclose your personal information.

Data Use
We limit the use of information provided to us on our Website to the following:

1. If you do not make a service request, donation, purchase, or otherwise identify yourself, we will have no personally identifiable information about you. We will only use aggregate information derived, in part, from your use of our site to improve our Website and our service to you.

2. If you provide personal information, we may enter your name into our constituent database and contact you in order to:

  • Complete voluntary surveys seeking feedback for quality and service improvement purposes.
  • Supply you with information including brain tumor-related health news, NBTS programs, events, and services.
  • Request voluntary time or monetary contributions to NBTS.
  • Request your participation in a NBTS research study.

3. We collect the email addresses of those who communicate with us by email. Inquiries may be forwarded to the appropriate NBTS department for response and may be entered into our constituent database. If your name is entered into the database, we may contact you (see 2 above).

4. Your health-related information is privileged and confidential and will not be shared or released to any organization or business entity other than our third party service provider, EmergingMed, which provides NBTS Clinical Trials Matching Service. If you are considering clinical trial participation and would like to use this Service, you must register with www.braintumor.org and complete a screening questionnaire. As part of the matching process, NBTS and EmergingMed will share your information with each other. If requested, NBTS will then contact you to discuss the details or provide further information.

Your Options
We respect your privacy and allow you to restrict internal and external sharing of your personal information. We recognize that you may wish to limit the ways in which we contact you and we offer the following options:

  • Do not contact me by telephone.
  • Do not contact me by postal mail.
  • Do not contact me by email.
  • Do not contact me with fundraising requests supporting NBTS.

To inform us of any desired restrictions, please email us at privacyrequest@braintumor.org. If you contact us with an opt-out request, all reasonable efforts will be taken to ensure that you will not receive any of the selected communications from us in the future.

Upon request, we will provide you with the information we maintain about you so that you may request corrections. This information will be sent via postal mail, which we believe is the most secure method of communication. Please contact us by email at privacyrequest@braintumor.org or in writing at:

National Brain Tumor Society
Security and Privacy Requests
55 Chapel Street, Suite 200
Newton, MA 02458

To protect your privacy and security, we will take reasonable steps to verify your identity before providing information or making corrections.

Data Security
We are committed to protecting the security of your personal information and to honoring your choices for its intended use. To prevent unauthorized access, maintain data accuracy, and ensure the correct use of information, we strive to maintain physical, electronic, and administrative safeguards.

We process your financial transactions securely using the Payment Card Industry Data Security Standard ("PCI DSS"). PCI DSS is the payment card industry security requirement for entities that store, process or transmit cardholder data, and has been endorsed by all the major card brands — Visa Inc., MasterCard Worldwide, Discover Network, American Express, and JCB. PCI DSS compliance gives consumers the confidence they need to know that organizations accepting electronic payments or donations are doing so in a verified, secure, and consistent fashion. Convio, our software provider for online marketing, fundraising, and advocacy, received Level 1 PCI compliance - the highest level validation. This means that the processes, procedures, network configuration, and overall environment used to process your financial support of our organization have met the stringent guidelines of a third-party audit and are in compliance with the high standards set by the industry. This comprehensive standard is intended to help organizations such as ours proactively protect your account data - a responsibility we take very seriously.

Inside NBTS, data is stored in password-controlled servers. Our staff and volunteers are educated about the importance of safeguarding your information and we are committed to holding them accountable for protecting your confidentiality. However, such precautions do not guarantee that our Website is invulnerable to all security breaks. NBTS makes no warranty, guarantee, or representation that the use of our Website is protected from viruses, security threats, or other vulnerabilities and that your information will always be secure.

Whenever NBTS permits an external third party to access personally-identifiable information, appropriate procedures are followed to help ensure that the information is used only for authorized purposes and by authorized persons in a manner consistent with the choices NBTS constituents have made under this statement, and that the security, integrity, and privacy of the information is maintained. While NBTS will employ procedures to help ensure that your information is only used for authorized purposes as described above, we cannot make any guarantees with respect to the actions or policies of such third parties.

Links within Our Website
Our privacy policies apply only to your use of the NBTS Website. This site contains links to other sites, including sites that have a special relationship with us. We do not disclose personably identifiable information to those operating linked sites and we are not responsible for their privacy practices. Links to other sites do not imply an endorsement of the materials or policies on those Websites. You should read the privacy policies of each site you visit to determine what information that site may be collecting about you.

Contact Us
This privacy statement will be updated periodically and posted on our Website. It applies only to our on-line practices and does not encompass other areas of the organization. It applies to the on-line practices of NBTS. References to "National Brain Tumor Society", "NBTS", "we", "us" and "our" are references to National Brain Tumor Society and its affiliates, staff, and volunteers. We reserve the right to change this policy at any time by posting revisions. You agree to review the Privacy Policy and Terms of Use each time you use our Website so that you are aware of any modifications. By accessing or using the Website, you agree to be bound by all of the terms and conditions of the NBTS Privacy Policy as posted at the time of your access or use. If you have any questions about our policy or our compliance, you may send us an email at privacyrequest@braintumor.org or write to:

National Brain Tumor Society
Security and Privacy Requests
55 Chapel Street, Suite 200
Newton, MA 02458


 2024 National Brain Tumor Society. All rights reserved. National Brain Tumor Society is a national nonprofit organization recognized as tax-exempt under Internal Revenue Code section 501(c)(3).