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NBTS Privacy Policy

Effective as of July 2021

Read the NBTS Terms and Conditions of Use

Our Commitment to Privacy

National Brain Tumor Society (“NBTS”) values your trust, and we understand the importance of protecting your privacy. We want to make sure you understand how your information is collected and used by NBTS. This privacy statement (“Privacy Statement”) describes what information we collect about you, including when and how we collect it; how we use it; with whom we may share it; and what choices you have regarding our use of your information.

This Privacy Statement applies to all information collected through your communications with NBTS, whether electronic, written or oral; information collected through mobile applications (“Apps”) or NBTS websites (“Sites”); as well as any other information about you that we may collect offline or receive from third-parties (collectively, social media tools, Apps, Sites, and offline or third-party information are referred to as the “Services”). By accessing our content and resources or providing your information to us, you accept and agree to the practices described in this Privacy Statement.

Because your privacy is important to us, we provide you with notices and choices about the collection and use of your information. To make these notices easy to find, links are provided from our homepage and donation webpages or other webpages that capture information about you. 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 an “NBTS Website”) or otherwise using our online resources,  you are agreeing to comply with and be bound by these Terms of Use. If you do not agree to these Terms of Use, you may not access or use our online resources.

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. Cookies are 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 blocking, accepting, or receiving notice of new cookies. However, please be aware that if you block cookies, some Website functionality may be lost.  By continuing to browse our website you consent to and accept the use of cookies.

Data Collection

National Brain Tumor Society wants you to know how we use and protect the important information you provide to us. This information summarizes our policy, procedures and practices.

We collect information as a way to further our mission of finding better treatments and ultimately a cure for brain tumors. The information you provide allows us to respond to your inquiries and to provide you with the information, resources, and assistance your request.

When we ask for certain types of sensitive information — such as health information or contact details—we will tell you how we intend to use and disclose that information. Additional information about how we collect, protect, and use information in our research, fundraising, outreach, education and other “offline” programs may be found at our Terms and Conditions statement.

We will use — and require any external vendors to use — reasonable and appropriate security practices to safeguard your information. By continuing to browse our website you consent to our collection and storage of your Personal Information (as defined below) for the limited purposes of NBTS’s fundraising and community outreach efforts.  You have the right at any time to withdraw your consent and request that your information be deleted.  If you change your mind about allowing us to store or use your information or have questions about our privacy practices, please use to let us know.

We collect personal information using various methods:

NBTS collects information that identifies you as an individual or information which is linked or linkable to you as an individual or household, which will collectively be referred to throughout this Privacy Statement as “Personal Information.” Personal Information may include but is not limited to contact information, demographic information, health and financial information, as well as call recordings and transcripts.

  • 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.
  • Personal information.We may request contact information such as your name, mailing address, telephone number, e-mail address, and your preferences for how you would like to be contacted by NBTS. We do not collect personally identifiable information from you unless you provide it to us voluntarily and knowingly. Personal information may be needed for certain optional online or offline activities.  Some of the fundraising sections of our Site make it convenient for your to solicit donations to NBTS from your own friends and contacts.  If you choose, you can provide name and contact information for your contacts you want to email to ask for donations.  NBTS (or NBTS’s vendor) will retain your friends’ contact information for your convenience for your own future fundraising efforts, but NBTS will not seek contact or donations from your contacts unless they actually become donors themselves.
  • If you choose to create a profile to register on the Website ( 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.
  • Contributions and donations.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. We may use a third-party payment service to process payments and we will retain your credit card information only for as long as necessary to process the transaction. When you send a donation in honor or in memory of someone and request that an acknowledgement be sent to another individual or a family, we will use the name and address of that individual or family for acknowledgement purposes only.
  • NBTS does not knowingly contact or solicit donations from individuals under 18 years of age. However, that may be occasionally unavoidable if an outside source gave us information but we did not collect or append age information to its lists.
  • 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.
  • 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.
  • Site and App Use.We may collect Personal Information through your use of the Sites and Apps, including NBTS’sonline public forums, discussion boards, or chat rooms. Please note that any information you post within these public forums will become public and may be read, collected, and used by anyone. Please exercise caution when deciding whether to disclose your Personal Information in public forums.
  • Online or Paper Form-based Event Registration. If you register to participate in a Society event we will ask you for Personal Information. We may also ask about your relationship to the brain tumor community but you are not required to provide this information to participate in Society events. This “relationship” information, however, is useful for event purposes and helps us let you know about special activities for care partners and survivors.
  • Third-party Fundraising Campaigns, Promotions or Events. We may use or interact with third-parties to conduct fundraising campaigns, promotions or events, including online platforms. In these instances, we may receive access to donor reports which includes donor names, contact information and donation amounts. We also may receive your Personal Information if you respond to a cause-related marketing campaign or other promotion benefitting NBTS that is conducted by a corporate partner.
  • Social Media Interfaces. If you elect to engage with our social media tools like Facebook, Google+, LinkedIn, Twitter, or others, personal Information from your social media account may be shared with us, which may include personal information that is part of your profile or your friends’ profiles; in addition, if you log-in to our website using your social media account, use a “like” button or use other social media features while visiting our website, those social media companies may collect information about you. Your interactions with social media companies and the use of their features are governed by their privacy policies.
  • Do Not Track Disclosure. Some web browsers have a “Do Not Track” feature that lets a user have the browser notify websites that the user does not want to have his or her online activities tracked.  NBTS’s website currently does not respond to such browser-initiated signals. Regarding any potential external tracking, please consult external website policies regarding their tracking practices and their responses to Do Not Track signals.
  • Email, Digital, and Telephone Marketing. You will be added to the NBTS email list if you register to receive emails, digital advertising, or telephone calls via a form or if you add your contact information to connect with us or receive blogs. You may opt out or modify your subscription to these communications by clicking on the “unsubscribe” link included in every email we send.
  • We use Google Analytics, which uses cookies and similar technologies to collect and analyze information about the use of the Services and report on activities and trends. This service may also collect information regarding the use of other websites, apps, and online resources. You can learn about Google’s practices by going to‌partners/ and opt-out of them by downloading the Google Analytics opt-out browser add-on, available at

How We May Use Your Personal Information

Unless you tell us otherwise, when you provide your Personal Information and when we collect it you are agreeing to allow us to use and disclose it as allowed by law and NBTS policies to deliver the programs you are involved with, engage in communications with you (electronic or otherwise as consistent with the mission) and in furtherance of our overarching mission and programs. When we ask for certain types of sensitive information—such as health information—we will tell you how we intend to use and disclose that information if applicable.By using our website or providing NBTS your Personal Information, you understand and consent to the collection, processing, transfer, and use of information in the manner and for the purposes set forth in this Privacy Policy.

  • Mission Delivery and Fundraising. We will use your Personal Information for mission delivery and support operations, and to respond to your inquiries and provide you with the information, resources and support services you request.
  • News, Content, and Developments.We may use your Personal Information to keep you informed about brain tumor-related news developments, to notify you of advancements, program updates, and developments that may be of interest to you, to invite you to upcoming Society events in your area, to request voluntary time or monetary contributions to NBTS, or to request your participation in a Society research study.
  • Understanding the Community.We may use your Personal Information to help us better understand the individuals we serve, to better communicate with you, and to better serve you and your community with relevant programs, services and information.
  • Data Analytics. We perform data analysis and research activities to gain a greater general understanding of brain tumors, treatments, and the related needs of patients and their carepartners. This analysis can help us improve patient experiences, mission delivery, and support.
  • Other Business Purposes.We may use Personal Information for other business purposes, such as conducting audits, fraud monitoring and prevention, developing new services, enhancing, improving or modifying our programs and our Services, identifying usage trends, determining the effectiveness of fundraising campaigns and mission activities, and updating and expanding our business activities.
  • Legitimate Marketing Purposes.We may use your data for legitimate marketing purposes where we believe our services and resources will be of interest to you. You can ask us not to use your personal data for marketing purposes. You can do this by “unsubscribing” on the forms we use to collect your data and on any marketing emails we send you. You can also ask us at any time by contacting us.
  • Third Parties. NBTS or a third party organization may perform analyses of website user behavior in order to improve programs, tailor information you receive, and measure user interest in various areas of this website. We will disclose this information to third parties only in aggregate form.
  • Build donor, supporter, or volunteer “persona’s to create aggregated profiles of individuals with similar interests, living locations, hobbies, information sources, and donation patterns. Personal Information may also be used for lead scoring, lead and demand generation, and donor identification purposes.
  • Health-data.Your health-related information is privileged and confidential and will not be shared or released to any organization or business entity other than an NBTS-approved third party service as long as you have approved the collection, storage, sharing, and analysis in writing through a disclaimer, email, contract, memorandum of understanding, or other legally-binding document.
  • If you provide personal information, we may enter your name into our constituent database and contact you in order to:
    • Complete voluntary surveys, polls or focus groups seeking feedback for quality and program improvement purposes.
    • Supply you with information including brain tumor-related health news, NBTS programs, events, and services.
    • Ask for participation or volunteering in signature, community, or special events.
    • Request voluntary time or monetary contributions to NBTS.
    • Request your participation in an NBTS research study.
    • Request your participation or input and feedback on NBTS programs, initiatives, or campaigns.
    • Engage with you by utilizing your Personal Information to identify, confirm, verify, process, prove, or troubleshoot donation or gift donations.
  • We collect the email addresses of those who communicate with us by email, web-based communications, social media communications, apps, telephone, digital marketing forms, polls, or surveys. Inquiries may be forwarded to the appropriate NBTS department, NBTS Staff, Board of Directors, or NBTS-approved volunteersfor response and may be entered into our constituent database. If your name is entered into the database, we may contact you.
  • Other Uses or Disclosures of Personal Information. We may also use and disclose your Personal Information as we believe to be necessary or appropriate: (a) to comply with applicable law, which may include laws outside your country of residence, to respond to requests from public and government authorities, which may include authorities outside your country of residence, to cooperate with law enforcement, or for other legal reasons; (b) to enforce our Terms of Use; (c) to protect our rights, privacy, safety or property, and/or that of our affiliates, you or others; and (d) under circumstances we believe appropriate to coordinate treatment related services with your provider or health plan, or for permissible public health purposes such as cancer surveillance. In addition, NBTS may use, disclose or transfer your information to a third-party in the event of any reorganization, merger, sale, joint venture, assignment, transfer or other disposition of all or any portion of our organization (including in connection with any bankruptcy or similar proceedings).

In addition to the other uses described in this section, we may also use your information as you expressly authorize us to do so.

Sharing Your Information with NBTS-approved Entities

Where necessary or where we have the right to do so, we will share your personal information internally and with NBTS-approved third parties including volunteers, business partners, suppliers and sub-contractors for mission delivery and advancement. NBTS will not sell, trade, or share your personal information obtained 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, Board of Directors, or NBTS-approved volunteers or third parties  – without your consent – nor will NBTS send donor mailings or emails on behalf of another organization without your written permission to do so.We will always use—and require our data management vendors to use—reasonable and appropriate security practices to safeguard your information.

NBTS may share select Personal Information with:

  • NBTS Staff Employees and Board of Directors
  • Third party providers that offer operational services to NBTS,
  • Mission collaborators such as NBTS-approved volunteers, regional boards, or event organizers,
  • Society affiliates that share a common mission,
  • Nonprofit list exchange with other nonprofit organizations, on a limited basis,
  • Social media tools and fundraising will link your accounts to fundraising efforts and applications.

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 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.  In addition, as noted elsewhere in this Privacy Statement, you have the option at any time to withdraw your consent for us to collect, store and share your Personal Information, and to have us delete it from our systems.  If you wish to exercise this option, please email us at


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 or in writing at:

National Brain Tumor Society
Security and Privacy Requests
55 Chapel Street, Suite 006
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. Blackbaud and Classy, our software provider for online marketing and fundraising, 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. We incorporate industry-standard security controls including firewalls and protocols including SSL to create a site that is resistant to standard internet-based threats. 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.

To learn more about the security protocols of our software providers please see the links below:
Phone 2 Action:

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 personal 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 online practices and does not encompass other areas of the organization. It applies to the online practices of NBTS. References to “National Brain Tumor Society”, “NBTS”, “we”, “us” and “our” are references to the 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 or write to:

National Brain Tumor Society
Security and Privacy Requests
55 Chapel Street, Suite 006
Newton, MA 02458

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