Legal

Privacy Policy

How the Short Bowel Syndrome Foundation protects your information

Effective Date: May 22, 2026

🔒

Your Privacy Matters

The Short Bowel Syndrome Foundation, Inc. (SBSF) respects the privacy of every individual who visits our website. This policy explains what information we may collect, how we protect it, and how it is used to support our rare disease community.

1. 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.

2. Information Collected Automatically

To keep our website accessible, secure, and user-friendly, our server automatically recognizes certain technical information:

📍 IP Address
🌐 Browser & OS
📅 Date & Time
📄 Pages Viewed

We use this aggregated, anonymous information only to analyze traffic patterns, measure the reach of our educational programming, and improve the website.

3. How We Use Your Personal Data

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

Answering your questions and matching you with peer support resources
Sending requested educational materials, foundation updates, or event invitations
Contacting you about administrative updates to programs you have enrolled in
🚫 We do not sell, trade, or rent your personal information to third parties.

4. Security & Data Integrity
🛡️

We take extensive organizational and technological precautions to protect your personal information and keep it accurate. We safeguard your data against:

Loss or accidental destruction · Falsification or manipulation · Unauthorized access, alteration, or disclosure

5. Links to External Websites

Our website contains links to industry partners and external support groups. SBSF is not responsible for the privacy practices, cookie usage, or content of those third-party websites. We encourage you to read the privacy statements of any external site that collects personal information.

6. Your Right to Opt-Out
✉️

You retain complete control over your data. If you no longer wish to receive email newsletters, physical mailings, or updates from SBSF, you can opt out at any time by contacting us or clicking the “unsubscribe” link at the bottom of our emails.

7. Policy Updates

This Privacy Policy may change from time to time to stay aligned with evolving privacy regulations. All updates will be posted on this page. We encourage visitors to review this policy periodically.

8. Contact Us
📞

If you have questions or concerns about this Privacy Policy or how your data is handled, please contact our administrative team:

Short Bowel Syndrome Foundation, Inc.
3436 L Street
Lincoln, NE 68510
Phone: (402) 429-8119
Email: ajablonski@shortbowelfoundation.org