Terms of Service

1. Acceptance of Terms

By accessing or using RareConnect ("the Service"), you agree to be bound by these Terms of Service. If you do not agree to these terms, please do not use our Service.

2. Description of Service

RareConnect is a community portal providing rare disease information, a directory of Patient Advocacy Groups (PAGs), and tools for community contributions. Our Service includes:

• Disease database powered by MONDO ontology
• Community-editable disease information
• PAG registry and directory
• Search and discovery tools

3. User Accounts

To access certain features, you must create an account. You agree to:

• Provide accurate and complete information
• Maintain the security of your account credentials
• Promptly update any changes to your information
• Accept responsibility for all activities under your account

4. User Contributions

When contributing content to RareConnect, you agree that:

• Your contributions are accurate and based on reliable sources
• You will cite sources appropriately
• You will not submit misleading, harmful, or inappropriate content
• Your contributions may be reviewed and moderated by our team and AI systems
• You grant RareConnect a license to display and distribute your contributions

5. PAG Registration

Patient Advocacy Groups registering on RareConnect agree to:

• Provide accurate organizational information
• Represent a legitimate patient advocacy organization
• Undergo our verification process
• Keep organization information up to date
• Use the assigned RDCP identifier appropriately

6. Prohibited Conduct

You agree not to:

• Use the Service for any unlawful purpose
• Submit false, misleading, or harmful information
• Impersonate others or misrepresent your affiliation
• Attempt to gain unauthorized access to our systems
• Interfere with or disrupt the Service
• Scrape or collect data without permission
• Use the Service to promote commercial products or services without authorization

7. Medical Disclaimer

RareConnect provides general information about rare diseases for educational purposes only. This information is not medical advice and should not be used for diagnosis or treatment. Always consult qualified healthcare professionals for medical decisions.

8. Intellectual Property

The Service and its original content (excluding user contributions) are owned by RareConnect and protected by intellectual property laws. Disease data is sourced from MONDO ontology under their license terms.

9. Limitation of Liability

RareConnect is provided "as is" without warranties of any kind. We are not liable for any damages arising from your use of the Service, including but not limited to direct, indirect, incidental, or consequential damages.

10. Termination

We reserve the right to suspend or terminate your access to the Service at any time for violations of these Terms or for any other reason at our discretion.

11. Changes to Terms

We may modify these Terms at any time. Continued use of the Service after changes constitutes acceptance of the modified Terms. We will notify users of significant changes.

12. Governing Law

These Terms are governed by applicable laws. Any disputes will be resolved in accordance with standard legal procedures.

13. Contact

For questions about these Terms, please contact us at:

Email: legal@rareconnect.org