Our Policies & Statements

Disclaimer Statement

This website provides educational and informational content about Tarlov cyst disease (TCD) and the activities of the Tarlov Cyst Disease Foundation (TCDF). This site is not intended as a substitute for professional medical advice, diagnosis, or treatment. The use of this website does not create a provider-patient relationship between you and TCDF or any of its staff, volunteers, or affiliated individuals. Do not use this information to diagnose or treat a medical condition without consulting a qualified health care provider. If you have questions about your health or are considering a new treatment, consult your physician or other qualified health care professional.

TCDF makes every reasonable effort to ensure the accuracy and currency of the information provided; however, TCDF disclaims all liability, to the fullest extent permitted by applicable law, for any content that is inaccurate, incomplete, or out of date. In no event shall TCDF, its officers, directors, employees, or volunteers be liable for any damages arising out of or in connection with the use or inability to use information on this site. This disclaimer applies both domestically and internationally.

All content on this website, including text, graphics, logos, and images, is the property of the Tarlov Cyst Disease Foundation. Content may be viewed and downloaded for personal, non-commercial, informational purposes only. No content may be reproduced, distributed, transmitted, displayed, or used for commercial purposes without the prior written consent of TCDF. Unauthorized use may result in civil and criminal penalties.

TCDF does not endorse, recommend, or make any representations regarding any specific medical treatment, product, service, physician, or health care provider. Any references to third-party organizations, products, or services are provided solely for informational purposes and do not constitute an endorsement or guarantee.

Donation Policy

The Tarlov Cyst Disease Foundation (TCDF) is a registered 501(c)(3) nonprofit organization. Donations are generally tax-deductible to the extent permitted by law. Unless otherwise specified for a particular purpose, donations may be used to support TCDF's mission, which includes research, education, and patient support, as well as for necessary operating expenses.
Donors will receive a written acknowledgment or receipt suitable for tax purposes. To request such documentation or a copy of TCDF's IRS determination letter, please contact us at contactus@tarlovcystfoundation.org.

Privacy Statement

The Tarlov Cyst Disease Foundation (“TCDF,” “we,” “us,” or “our”) is committed to protecting your privacy. This policy describes what information we collect, how we use and protect it, and your choices regarding that information. By using our website or providing information to us, you agree to the practices described in this Privacy Policy.

Information We Collect

When you submit a form on our website (e.g., a “contact us” form, a story of hope, or a donation), register for an event (e.g., a webinar), or respond to a survey, we may collect the following categories of information:

  • Personal identifiers — name, email address, phone number, mailing address, and date of birth.
  • Self-reported health-related information — such as a self-reported Tarlov cyst diagnosis or related medical history you choose to share.
  • Payment information — credit card or bank account details provided when you make a donation or payment, processed securely by a PCI DSS-certified third-party payment processor.
  • Website usage data — device IP address, browser type, operating system, cookies, and referring website information collected automatically when you visit our site.
  • Survey responses — opinions about our events, services, or programs. Participation is always voluntary.

How We Use Your Information

We use the information you provide to deliver programs and services, respond to your inquiries, process donations, communicate with you about TCDF activities, and advance TCDF’s mission. We will not sell, rent, trade, or otherwise disclose your personal information to third parties without your consent, except as described in this policy or as may be required by law.

How We Protect Your Information

Access to personal data is limited to authorized TCDF staff and contracted service providers who need the information to perform their duties. Our security measures include:

  • Multi-factor authentication (MFA) required for all Google Workspace accounts. Cloud backup and encryption of all Google Workspace data (Gmail, Drive, etc.).Controlled access permissions to TCDF’s Google Workspace.
  • Payment and donation information is processed through Stripe, which is PCI DSS certified. TCDF does not store complete credit card or bank account numbers on its own systems.

Children’s Privacy

Our website is not directed at children under the age of thirteen (13), and we do not knowingly collect personal information from children under 13. If we learn that we have inadvertently collected personal information from a child under 13, we will promptly delete that information. If you believe a child under 13 has provided personal information to TCDF, please contact us immediately at the address below.

Data Retention

We retain personal information only for as long as reasonably necessary to fulfill the purposes for which it was collected, to comply with our legal and regulatory obligations, to resolve disputes, and to enforce our agreements. When personal information is no longer needed, we will securely delete or de-identify it in accordance with applicable law.

Contact Us

If you have questions about this Privacy Policy, wish to exercise your rights under applicable law, or would like to review, update, or request deletion of your information, please contact us at: contactus@tarlovcystfoundation.org.

Effective Date

This Privacy Policy is effective as of July 1, 2026. TCDF reserves the right to update this policy at any time. Any material changes will be posted on our website, and we encourage you to review this policy periodically.