Short Bowel Syndrome Foundation, Inc. (SBSF) — Website Privacy Policy

Effective Date: May 22, 2026

1. Introduction

The Short Bowel Syndrome Foundation, Inc. (SBSF) respects the privacy of every individual who visits our website. This Privacy Policy outlines the specific types of information we may collect, how we protect that data, and the strict guidelines regarding how it is utilized to support our rare disease community.

2. Personal Data & Voluntary Collection

SBSF will not collect any personally identifiable information about you—such as your name, mailing address, telephone number, or email address—unless you choose to provide it to us voluntarily (for example, when registering for our Educational Hub, signing up for newsletters, or contacting an advocate).

🔒 Your Choice: If you do not want your personal data collected, please do not submit it to us. Deciding not to provide personal data will not prevent you from browsing the public educational materials on our website.

3. Non-Personally Identifiable Information Collected Automatically

To ensure our website remains accessible, secure, and user-friendly, our web server automatically recognizes certain technical information for each visitor.

This automatically transmitted data includes:

  • Your Internet Protocol (IP) address

  • Browser type and operating system

  • Date and time of your visit

  • Specific pages viewed within the SBSF site

We use this aggregated, anonymous information strictly to analyze traffic patterns, measure the reach of our educational programming, and enhance the overall usability of our website. Your computer provides this information automatically each time you log on, unless you have activated privacy-blocking technology available in your web browser.

4. Use of Your Personal Data

When you voluntarily provide personal data, we use it solely to fulfill your specific requests and support your journey with SBS. Common uses include:

  • Answering your direct queries and matching you with peer support resources.

  • Sending you requested educational materials, foundation updates, or event invitations.

  • Contacting you regarding administrative updates to programs you have enrolled in.

SBSF maintains a strict policy against data commercialization. We do not sell, trade, or rent your personal information to third parties.

5. Security & Data Integrity

We take extensive organizational and technological precautions to ensure the security of your personal information and strive to keep it accurate. We implement robust safeguards to protect your data against:

  • Loss or accidental destruction

  • Falsification or manipulation

  • Unauthorized access, alteration, or disclosure

6. Links to External Websites

Our website contains structural resources, medical reference tools, and links to industry partners or external support groups. Please be aware that SBSF is not responsible for the privacy practices, cookie usage, or content of those third-party websites. We encourage our users to read the privacy statements of any external site that collects personally identifiable information.

7. Your Right to Opt-Out

You retain complete control over your data. If you no longer wish to receive email newsletters, physical mailings, or informational updates from SBSF, you can opt-out of all future communications at any time. To do so, please contact us directly using the communication methods listed on our website, or click the “unsubscribe” link provided at the bottom of our official emails.

8. Policy Updates

To stay aligned with evolving healthcare communication standards and digital privacy regulations, this Privacy Policy may change from time to time. All updates and modifications will be instantly posted on this dedicated page. We encourage visitors to review this policy periodically to stay informed about how we protect your information.

9. Contact Us

If you have any questions, concerns, or technical inquiries regarding our Privacy Policy or how your data is handled, please do not hesitate to contact our administrative team at the address and contact information provided on our main website.