AMERICAN BRAIN TUMOR ASSOCIATION

Notice of Privacy Practices Effective as of October 1, 2023

THIS NOTICE DESCRIBES HOW INFORMATION ABOUT YOU MAY BE USED AND DISCLOSED. PLEASE REVIEW IT CAREFULLY.

The American Brain Tumor Association (ABTA) values your trust, and we understand the importance of protecting your privacy. This Privacy Policy (“Privacy Policy”) explains the Personal Information we collect from you; how we use it; with whom we may share it; and the choices you have regarding our use of your information.

This Privacy Policy applies to all information collected through your engagement with ABTA, whether electronic, written, or oral; information collected through ABTA mobile applications (“Apps”) or ABTA websites (“Sites”) that include a link to this Privacy Policy. By providing your information to us, you accept and agree to the practices described in this Privacy Policy.

Please note that this Privacy Policy does not apply to the websites of other unrelated companies or organizations to which we provide links.

Personal Information

“Personal Information” is any unencrypted or non-deidentified information that enables ABTA to identify you, directly or indirectly, by reference to an identifier such as your name, identification number, location data, online identifier or one or more factors specific to your physical, physiological, genetic, mental, economic, cultural, or social identity.

Personal Information does not include any information that has been de-identified, pseudonymized, anonymized, aggregated, and/or otherwise processed so as to be unidentifiable in such a way that the information can no longer be attributed to a specific individual (by reasonable means) without the use of additional information, and where such additional information is kept separate and under adequate security to prevent unauthorized re-identification of a specific individual such that one could not, using reasonable efforts, link such information back to a specific individual.

Collection of Personal Information

When you engage with ABTA or visit or use our Services, we may collect Personal Information from you, including contact information, demographic information, health information, financial information, social media information, employment information, and internet (website) activity information.

Contact Information. Contact information may include information such as your name, address, telephone number, and email address.

Sensitive Information. Demographic information may be requested, such as your gender identity, race or ethnicity, marital status, and/or primary language.

Health Information. Heath information may be requested including the type of brain tumor, date of diagnosis, treatment stage (newly diagnosed, recurrence) and/or role (patient, caregiver, family member, friend). This health information may be transmitted electronically for the uses and/or disclosures described in this Privacy Policy.

Financial Information. If you make a donation to ABTA or make a purchase on an ABTA Site, your payment information such as your credit card number may be collected in order to process your transaction. We will retain your credit card information only for as long as necessary to process the transaction.  Please note ABTA works with Service Providers (as defined below) to handle payment transactions including the collection of your credit card or other financial account information. As such, ABTA does not itself retain your credit card or other financial account information. You are subject to the privacy policies and terms and conditions of our Service Providers when making such donations or purchases and the terms of which may differ from those of ABTA. Please review the Service Providers’ privacy policies and terms and conditions before using their services.

Social Media Information. ABTA may collect social media identifiers and/or interests or opinions expressed if you engage on ABTA social media platforms.

Employment Information. If you apply for employment or volunteer your professional services, ABTA may collect employment information including title and organization with whom you work. Further, if you make a donation to ABTA or make a purchase on an ABTA Site, we may also collect the name of your employer if you would like for that company to make a matching donation.

Internet Activity. ABTA may also collect information that does not reveal your specific identity or does not directly relate to an identifiable individual, including browser and device information, App usage data, Internet Protocol address, and information collected through cookies, pixel tags, and other technologies.

Public Information. ABTA may also collect information about you from publicly available sources. Information you make publicly available in any public or open forum, such as on a social network, may be considered public information for the purposes of this Privacy Policy, and may be accessed and collected by ABTA. Please be aware that any content or information you share with or provide to third parties using or related to your use of the Services is neither private, nor confidential. ABTA is not responsible for any content or information you post or share with third parties. If you do not wish for certain information to be public, please do not share it.

Browser and Device Information. Certain information is collected by most browsers or automatically through your device, such as your Media Access Control (MAC) address, computer type (Windows or Mac), screen resolution, operating system name and version, device manufacturer and model, language, Internet browser type and version and the name and version of the Services (such as the App) you are using.

ABTA Third-Party App Usage Data. When you use ABTA Apps, we and our service providers may track and collect App usage data, such as the date and time your device accesses our servers and what information and files have been downloaded to the App based on your device number. 

Internet Protocol Address. Your IP address is automatically assigned to your computer by your Internet Service Provider. An IP address may be identified and logged automatically in our server log files whenever a user accesses the Services, along with the time of the visit, the page(s) that were visited and your approximate location from your IP address.

Web Server Traffic Pattern Information and Browsing History. ABTA collects standard web server traffic pattern information and your browsing history. General traffic, Site usage, browser information, and length of stay information are collected and stored in log files.

Cookies. ABTA uses “cookies,” small files that are sent to your web browser and stored on your computer’s hard drive, to enhance your online experience. The cookies collect information about your use of our Services, such as the type of browser you use, your home domain or Internet service provider, your referrer URL (which is the URL for the website that you were viewing prior to visiting the website), how you were directed to the Services, which specific pages you accessed, how long you view each page, the time and date you access our Services and anonymous traffic data. If you do not want information collected using cookies, most browsers allow you to automatically decline cookies or be given the choice of declining or accepting a cookie (or cookies) from a website.

Pixel Tags and Other Similar Technologies. Pixel tags (also known as web beacons and clear GIFs) may be used to, among other things, track the online actions of users of the Services (including email recipients), measure the success of our marketing campaigns and compile statistics about usage of the Services.

Targeted Outreach and Advertising. We may work with third-party service providers to target our advertisements and outreach to you based on your preferences or internet activity information, in certain cases combining data we collect from you through online cookies and other technologies with other de-identified data. In addition, we may use third-party service providers to display content-specific advertisements to you after you have left our Sites when you go to other websites. These third-party service providers may use cookies, web beacons, or similar technologies, to tailor advertisements to interests shown by browsing our Sites or other by visiting other websites. We do not control the third-party service providers’ tracking technologies or how they may be used. The collection of your information or use of technologies by third-party service providers are subject to those third parties’ privacy policies.

Analytics. ABTA uses 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.

Physical Location. We may collect the approximate physical location of your device by, for example, using satellite, cell phone tower, or Wi-Fi signals. We may use your device’s approximate physical location to provide you with personalized location-based services and content. You may control such collection and/or sharing of your device’s location, but if you do, we may not be able to provide you with the applicable personalized services and content.

Uses and Disclosures of Internet Activity Information. We may use and disclose Other Information for any purpose, except where we are required to do otherwise under applicable law. In certain instances, we may combine Internet Activity Information with Personal Information. If we do this, we will treat the combined information as Personal Information. For example, we may work with data providers to tailor our communications to you, including fundraising and outreach communications, based on your areas of interest and other information about you. To do this, we may place cookies on your browser and combine IP address or browsing history with other de-identified data (such as a hashed, non-readable e-mail or postal address). We may then communicate with you through mail, email, or other channels.

How ABTA Collects Personal Information

• Requests for Information and Resources. When you contact ABTA by written mail, email, phone or Site forms for information and resources, we will collect the Personal Information you provide to assist you.

• Patient Support Services. ABTA offers many educational and support programs and services to help patients and their caregivers manage their brain tumor diagnosis. When you register or sign up to participate in ABTA educational and support programs or services, we will collect your Personal Information. We will use this information to assist you with your support request and may maintain this information to assist you or other users with support requests. Please do not submit any information to us via a support submission, including confidential or sensitive information that you do not wish for ABTA or its Service Providers to have access to or use in the future.

• Site and App Use. We may collect Personal Information through your use of ABTA Sites and Apps, including online public forums inclusive of discussion boards and personal story submissions to Sites. If you become a registered user of a Site or App, we will collect login and profile information and may also collect information about your areas of interest. Please note that any information you post within our 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.
• Donations. If you donate to ABTA, we will collect Personal Information from you that may include: your name, address, telephone number, and/or e-mail address so that we can send you a receipt and thank you for your donation. We may also collect employer information if your employer participates in our donor match program or if the fundraiser is being promoted by your employer. We may also collect limited financial information to process your donations.

• Employment or Volunteer Participation. If you seek employment with ABTA or volunteer for ABTA, we will collect information related to your role. For instance, we will collect employment history information if you submit a resume to ABTA. If you are volunteering to provide peer-to-peer support for brain tumor patients or caregivers, we may ask about your relationship to brain tumors, tumor type, demographic information, or the languages you speak.

• Event Registration. If you register to participate in an ABTA event, such as Breakthrough for Brain Tumors 5K (BT5K), Team ABTA and Fundraise Your Way, we may also ask about your relationship to brain tumors, but you are not required to provide this information to participate. This information, however, is useful for event purposes and helps us let you know about special activities for caregivers and survivors.

• Vendors. We may collect information from companies which contract with ABTA to provide services such as name, employer, title, and business contact information. If it is necessary for the purpose of paying vendors for services provided, we may also collect bank account information, employer identification number or Social Security number, etc.

• 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 include donor names, contact information, and donation amount. We also may receive your Personal Information if you respond to a cause-related marketing campaign or other promotion benefiting ABTA that is conducted by a corporate partner.

• Social Media Interfaces. If you elect to connect your social media account to ABTA social media Site account(s), certain Personal Information from your social media account will be shared with ABTA, 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.

How ABTA May Use Your Personal Information

Mission Delivery and Support Operations. The collection, use, and disclosure of your Personal Information will be consistent with our mission. These activities include: the direct provision of ABTA organization information, brain tumor information, patient support programs, and services as well as mission support operations such as data analysis, program improvement, fundraising events, and activities.

Fundraising. ABTA may use certain information (name, address, telephone number or e-mail information, date of birth, gender, dates of service, department of service information, etc.) to contact you for the purpose of raising money for ABTA.

Business Purposes. ABTA may use Personal Information for other business purposes, such as conducting audits, data analysis, recordkeeping, 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.

Data Analytics. ABTA may use data to evaluate engagement levels with our Sites and programs. We also perform data analysis and research activities, such as surveys, to gain a greater general understanding of the needs of brain tumor patients and caregivers. This analysis can help us improve patient experiences, mission delivery, and support.

SMS (Text Messages). ABTA may send you Short Message Service (“SMS”) messages, which may deliver up to three messages per day to your wireless device (unless you communicate further with us), but message frequency may vary. We may use your information to contact you about your purchases, returns (if available), Website or Mobile App updates, conduct surveys, event information, public policy matters, research updates, fundraising opportunities, or informational and service-related communications, including important security updates. You may remove your information by replying “STOP” to the SMS text message you received. After you send the SMS message “STOP” to us, we will send you an SMS message to confirm that you have unsubscribed. Alternatively, you may submit your request (see Contact Information) by email to us, including the email address and phone number you registered with us, or by any reasonable means. Please know that requests received by means other than email may require a reasonable amount of time to process before taking effect. After this, you will no longer receive SMS messages from us. If you want to join again, just sign up as you did the first time, and we will start sending SMS messages to you again. For help, please reply to a text with “HELP”. Message and data rates may apply, depending on your cell phone plan. Carriers are not liable for delayed or undelivered messages.

Information Sharing with Third Parties

Except for the limited purpose outlined below, ABTA does not share or sell Personal Information of its constituents. ABTA does share Personal Information with its service providers, program volunteers, and other third parties that assist ABTA in furtherance of its mission.

Service Providers. ABTA may share Personal Information with third parties that provide services on our behalf (such as website hosting, information technology and infrastructure, data analytics, email delivery, payment processing, order fulfillment, conference and event registration, auditing, or other services) or that assist ABTA in providing you with support and resources (“Service Providers”). These Service Providers may have access to your Personal Information in order to provide these services. You are subject to the privacy policies and terms and conditions of our Service Providers which may differ from those of ABTA.

Volunteers. We may share limited personal information, such as name and contact information with volunteers who are assisting ABTA and who require the information as part of their duties. For example, volunteers who assist with on-site registration or check-in for fundraising events or educational programs may have access to your name and phone number.

Peer-to-Peer Mentors and Mentees. Participating in the ABTA Patient and Caregiver Mentor Support Program will require the ABTA to share limited Personal Information with the matching Mentor or Mentee. Brain Tumor patients and caregivers participating in the program will require consent to authorize ABTA to share Personal Information.

Social Media. If you engage with ABTA on a public, social media platform, you may be sharing your Personal Information with your friends associated with your social media account, to other website users, and to your social media account provider, in connection with your social sharing activity. By connecting your personal social media account(s) with ABTA social media account(s), you authorize ABTA to share information with your social media account provider, and you understand that the use of the information we share will be governed by the social media provider’s privacy policy. Please note that any information you post within these public forums or social media pages may become public and may be read, collected, and used by anyone. Please exercise caution when deciding whether to disclose your Personal Information in these forums.

Memorial or Tribute Giving. You may choose to honor someone whose life has been impacted by cancer by making a donation in their name. Once your donation is received and you have requested a notification be sent to the individual or family, ABTA will send a card to the individual or family acknowledging your gift. The amount of money donated through memorial donations is kept confidential, but the individual (or their immediate family in the case of a memorial donation) may be provided with the name and address of those individuals who have donated in honor of their loved one, whether in the card itself or at the request of the honoree or family.

Nonprofits

Like many other groups, ABTA may share Personal Information that we collect with other nonprofit organizations. If you do not want your Personal Information shared with other organizations, please contact us at the address below and we will remove you from any such shared lists.

Posted Content on ABTA Website, Public Forums, Social Media Accounts and Third-Party Platforms

ABTA reserves the right, but has no obligation, to monitor the user content you post on our website, public forums, social media accounts and third-party platforms or apps (collectively “Content”). We have the right to remove any such Content or material for any reason or no reason, including without limitation if, in our sole opinion, such Content or material violates, or may violate, any applicable law or to protect or defend our rights or property or those of any third party. We also reserve the right to remove Content upon the request of any third party. Your Content is posted and transmitted to others at your own risk. We cannot control the actions of other users of the Website or Mobile App with whom you may choose to share your Content. Therefore, we cannot and do not guarantee that your Content will not be viewed by unauthorized persons. By posting any Content or submitting Content for posting you agree to and do hereby grant ABTA and our licensors, affiliates, partners, successors and assigns, a nonexclusive, perpetual, irrevocable, worldwide, sublicensable, transferrable, royalty-free right and license to use, store, display, publish, transmit, transfer, distribute, reproduce, rearrange, edit, redact, modify, aggregate, summarize, adapt, create derivative works of and publicly perform the Content that you post or otherwise submit to us for any purpose, in any form, medium, or technology now known or later developed (“Right to Use”). The Right to Use you grant us above also extends to any Content that you have posted to our Facebook or other social media account pages, or on other websites, e.g., Google, Yelp, Tripadvisor, Instagram, etc. The term “Use” includes, but is not limited to, use, reproduce, modify, publish, list information regarding, edit, delete, translate, distribute, publicly display, publicly perform, and make derivative works of the content.

Third Party Websites

ABTA website may contain links to third party websites. When you click on a link to any other website or location, you will leave our website and go to another site, and another entity may collect personal information from you. We have no control over, do not review, and cannot be responsible for these outside websites or their content. Please be aware that the terms of this Privacy Policy do not apply to these outside websites or content, or to any collection of your personal information after you click on links to such outside websites. We encourage you to read the privacy policies of every website you visit. The links to third-party websites or locations are for your convenience and do not signify our endorsement of such third parties or their products, content, or websites.

Privacy Options and Access

Contact Preferences and Restrictions. ABTA respects your privacy and recognizes you may wish to limit the ways in which we contact you and/or share your Personal Information, including for fundraising purposes. On many of our email communications you may unsubscribe from receiving email communications, which will unsubscribe you from all types of ABTA communications. However, we will continue to send transaction-related emails regarding our relationship and the services you have requested.

In addition, ABTA offers the following options:

• Do not contact me by postal mail.
  • Do not contact me by telephone
  • Do not contact me by email.
  • Do not share my information.
  • Delete all my information.

Please note that if you unsubscribe from receiving ABTA communications but later re-engage with ABTA without indicating your intent to opt-out, we will re-subscribe your email and contact information to ensure that you do not miss ABTA updates. 

To inform ABTA of any desired restrictions, please email us at info@abta.org, call us at 773-577-8750, or mail your request to: American Brain Tumor Association, Attn: 8550 West Bryn Mawr Avenue, Suite 550, Chicago, IL 60631, Attn: Customer Service.

Personal Information Changes

You may request access, updating or the correction of inaccuracies in other personal information in our custody or control, you can email us at info@abta.org, call us at 773-577-8750, or mail your request to: American Brain Tumor Association, 8550 West Bryn Mawr Avenue, Suite 550, Chicago, IL 60631, Attn: Customer Service.

We reserve the right to retain any personal information reasonably necessary to appropriately document our business activities and for archival and record retention purposes. We will store personal information for as long as reasonably necessary for the purposes described in this Privacy Policy. You may have a right to request deletion of your personal information by us, and we will use commercially reasonable efforts to honor your request where required by law, but please note that we may be required to keep such information and not delete it (or to keep this information for a certain time, in which case we will comply with your deletion request only after we have fulfilled such requirements). When we delete any information, it will be deleted from the active database, but may remain in our archives. We may also retain your information for fraud or similar purposes.

Personal Information Security

The security of your personal information is important to us. We follow generally accepted industry standards to protect the personal information submitted to us, both during transmission and once we receive it. However, no method of transmission over the Internet, or method of electronic storage, is 100% secure. Therefore, we cannot guarantee its absolute security.

Collection of Information on Minors

With the signed consent of a parent or guardian, children under the age of 18 are able to participate in select ABTA fundraising events, programs and services, such as volunteering for various ABTA initiatives, Breakthrough for Brain Tumors 5K Run & Walk (BT5K), Fundraise Your Way, and personal information may be collected from such participating children. ABTA 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 list. If you believe that we might have any personal information about a child under 18, please contact us at info@abta.org.

Notification of Privacy Statement Changes

We may update this Privacy Policy to reflect changes to our information practices. If we make any material changes, we will notify you by email or by means of a notice on our website prior to the change becoming effective. We encourage you to periodically review this policy for the latest information on our privacy practices.

If you have any questions about this Privacy Policy, please contact us at:

Address:   

American Brain Tumor Association
Attention: Privacy Officer
8550 W. Bryn Mawr Ave. Ste 550
Chicago, IL 60631

E-mail: privacy@abta.org

Phone: 773-577-8750

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