1. Purpose of the Platform
The GNRD Platform is a secure, collaborative digital space designed to connect stakeholders involved in rare diseases globally, including healthcare professionals, researchers, policymakers, and patient representatives.
Its purpose is to:
- Facilitate knowledge exchange and collaboration
- Support the development of good practices and shared resources
- Strengthen the global rare disease community
- Contribute to the development of frameworks, tools, and knowledge that may support improvements in care for people living with rare diseases
2. Access and Membership
- Access to the platform is restricted to registered and approved users.
- The platform administrators reserve the right to approve, deny, or revoke access at their discretion.
- Users may request deletion of their account and personal data at any time by contacting programme@rarediseasesint.org
3. User Responsibilities
By using the platform, users agree to:
- Engage respectfully and professionally with other members
- Share accurate, evidence-based, and appropriate information
- Contribute constructively to discussions, working groups, and shared resources
- Respect the diversity of perspectives, backgrounds, and expertise
- Maintain the confidentiality of their login credentials and are responsible for all activities carried out under their account
Users must not:
- Share misleading, harmful, or inappropriate content
- Use the platform for commercial promotion without prior approval
- Upload content that infringes on intellectual property rights
- Share confidential or sensitive information without proper authorization
- Attempt to compromise the platform’s security, functionality, or access controls, including unauthorized access, hacking, or disruption of services.
- Use the platform to seek or provide personal medical or clinical advice
The platform is intended for professional exchange and collaboration, not for individual diagnosis, treatment recommendations, or clinical decision-making.
4. Confidentiality and Data Protection
- Users agree to respect the confidentiality of discussions and materials shared within the platform, especially within restricted working groups.
- Personal data will be handled in accordance with applicable data protection regulations (e.g. GDPR).
- Users must not share personal or sensitive data of others without appropriate consent.
- Content shared on the platform (e.g. forum posts, documents, contributions) may be visible to other registered and approved users
5. Content Sharing and Intellectual Property
- By sharing content on the platform, users grant GNRD and other members the right to view and use the content for collaborative and non-commercial purposes, unless otherwise specified.
- Proper attribution should always be given when using shared materials.
6. Collaboration Spaces
- Forums and Working Groups (WGs) are collaborative spaces, with specific objectives.
- Access to Forums or WGs may be subject to approval.
Members of WGs are expected to:
- Actively contribute where possible
- Respect group norms and confidentiality
- Use shared tools (documents, forums) responsibly
7. Platform Governance and Moderation
Platform administrators may:
- Monitor activity to ensure compliance with these Terms
- Remove content that violates these Terms
- Suspend or terminate user access if necessary
Decisions will be made to ensure a safe, respectful, and productive environment.
8. Liability
- The platform is intended for collaboration and knowledge exchange; it does not replace professional, clinical, or legal advice.
- GNRD is not responsible for the accuracy or use of user-generated content.
- GNRD is not responsible for the content, accuracy, or safety of external websites or resources shared on the platform.
- To the extent permitted by applicable law, GNRD shall not be liable for any indirect or consequential damages arising from the use of the platform
9. Amendments
- These Terms may be updated as the platform evolves.
- Users will be informed of significant changes.
10. Privacy Notice
By registering on the platform, users acknowledge that they have read and understood the GNRD Privacy Notice and agree to the collection and use of their personal data as described therein.
11. Governing law
These Terms are governed by and construed in accordance with the laws of France.
Any disputes arising in connection with the platform shall be subject to the jurisdiction of the competent courts of France.
12. Contact
For questions or concerns regarding the platform, users can contact:
programme@rarediseasesint.org
