Brain Tumor Network, Inc. (“BTN,” “we,” “us,” or “our”) is a Florida not-for-profit organization. We are committed to respecting your privacy and safeguarding information collected through our website, www.braintumornetwork.org (the “Site”).
This Privacy Policy explains how BTN collects, uses, stores, and discloses information obtained through the Site and in connection with our navigation services.
Information We Collect
Information You Provide Voluntarily
Health Information
At your request, and pursuant to a signed authorization, BTN may receive medical records or other health information from your healthcare providers. BTN receives this information solely to provide informational and navigation services requested by you.
BTN is not a covered entity under the Health Insurance Portability and Accountability Act of 1996 (“HIPAA”).
Automatically Collected Information
How We Use Information
BTN may use information to:
BTN does not sell or rent personal information.
Brain Cloud Database, Research, and Data Use
Information provided to BTN may be stored in BTN’s proprietary Brain Cloud database, which supports BTN’s navigation services, operational activities, advocacy efforts, and research initiatives.
BTN may use information contained in the Brain Cloud database to generate de-identified or aggregated datasets, analyses, insights, or reports, which may be shared with research partners and collaborators to advance brain tumor research and improve patient outcomes.
Where practicable, identifying information is removed prior to use or disclosure. However, users acknowledge that certain types of data, including genetic or molecular data, may carry an inherent risk of re-identification despite de-identification efforts.
BTN retains ownership of all compilations, analyses, and derivative works created from data stored in the Brain Cloud database.
Use and Disclosure for Research and Collaboration
BTN may use and disclose de-identified and aggregated data derived from information received through its services, including information related to diagnosis, treatment pathways, clinical trial availability, and care navigation outcomes, for purposes that advance BTN’s mission.
Such disclosures may include, but are not limited to, sharing with:
These disclosures are intended to:
BTN does not disclose identifiable personal information for these purposes without appropriate authorization.
Sharing of Information
BTN may share information:
All recipients are expected to maintain appropriate confidentiality protections.
Data Security
BTN implements reasonable administrative, technical, and physical safeguards. No system can be guaranteed to be 100% secure.
Your Choices & Rights
You may:
Revocation will not apply to information already used or disclosed, or to de-identified data already incorporated into BTN systems.
Requests may be sent to: privacy@braintumornetwork.org
External Links
BTN is not responsible for the privacy practices of third-party websites.
Changes to This Policy
Updates will be posted with a revised effective date.
Contact Information
Brain Tumor Network, Inc.
816 A1A North, Suite 207
Ponte Vedra Beach, Florida 32082
Last Updated: January 23, 2026