Privacy Policy
Last updated: December 10, 2025
1. Introduction
RareConnect ("we," "our," or "us") is committed to protecting your privacy. This Privacy Policy explains how we collect, use, disclose, and safeguard your information when you visit our website and use our services.
2. Information We Collect
Information You Provide
- Account information (name, email address, password)
- Profile information for Patient Advocacy Group (PAG) registration
- Content contributions and edits to disease information
- Communications with us (support requests, feedback)
Information Collected Automatically
- Log data (IP address, browser type, pages visited)
- Device information (device type, operating system)
- Usage data (features used, search queries)
3. How We Use Your Information
We use the information we collect to:
- Provide and maintain our services
- Process PAG registrations and verifications
- Moderate community contributions
- Improve our platform and user experience
- Communicate with you about updates and changes
- Ensure the security and integrity of our services
4. Information Sharing
We do not sell your personal information. We may share information in the following circumstances:
- Public Contributions: Disease information contributions are publicly visible with attribution
- PAG Profiles: Verified PAG information is publicly displayed in our directory
- Service Providers: We may share data with trusted third-party services that help us operate our platform
- Legal Requirements: We may disclose information if required by law
5. Data Security
We implement appropriate technical and organizational measures to protect your personal information against unauthorized access, alteration, disclosure, or destruction. However, no method of transmission over the Internet is 100% secure, and we cannot guarantee absolute security.
6. Your Rights
Depending on your location, you may have the following rights:
- Access your personal information
- Correct inaccurate information
- Request deletion of your data
- Object to or restrict certain processing
- Data portability
To exercise these rights, please contact us at privacy@rareconnect.org.
7. Cookies
We use cookies and similar technologies to maintain your session, remember your preferences, and analyze how our services are used. You can control cookies through your browser settings.
8. Children's Privacy
Our services are not directed to children under 13. We do not knowingly collect personal information from children under 13. If you believe we have collected information from a child under 13, please contact us immediately.
9. Changes to This Policy
We may update this Privacy Policy from time to time. We will notify you of any changes by posting the new policy on this page and updating the "Last updated" date.
10. Contact Us
If you have questions about this Privacy Policy, please contact us at:
Email: privacy@rareconnect.org