Privacy policy

1.Who we are

Rare Diseases International (RDI) is the global alliance of persons living with a rare disease and their families, across all countries and all rare diseases.

This privacy notice explains how we collect, use, and protect your personal data when you use the GNRD platform.

Rare Diseases International (RDI) acts as the data controller for the personal data processed through the GNRD platform

Contact details:
Email: programme@rarediseasesint.org 

2. What personal data we collect

We may collect and process the following personal data when you register and use the platform:

• Identification and contact details (e.g. first name, last name, email address)
• Account information (e.g. password, login credentials)
• Location data (e.g. country of residence)
• Professional or user profile information, including your role or affiliation (e.g. healthcare professional, researcher, patient, caregiver, policymaker, industry representative)
• Platform activity data, such as participation in working groups, forum contributions, and documents shared
• Some information you provide may be considered sensitive personal data under applicable data protection laws. We process such data only on the basis of your explicit consent, in accordance with Article 9 of the GDPR.

3.How we collect your data

We collect personal data:

• Directly from you when you register on the platform
• When you participate in discussions, working groups, or upload content
• Through your use of the platform (e.g. login activity, interactions)

4. How we use your data

We use your personal data to:

• Manage your account and access to the platform
• Approve and verify users
• Facilitate collaboration, knowledge exchange, and participation in Working Groups
• Manage content (forums, documents, events)
• Communicate with you about platform activities

5. Lawful bases for processing

Under the General Data Protection Regulation (GDPR), we rely on:

• Consent: for specific activities such as account registration and where users choose to share profile information
• Legitimate interests: to operate and manage the platform, facilitate collaboration, and support the objectives of GNRD
• Explicit consent: where special categories of personal data (such as health-related information) are involved

6. Who we share your data with

We may share your data with:

Data processors, including:

• Web development and hosting provider
• Cloud service providers (e.g. Microsoft 365 / SharePoint)

These providers support the technical operation, hosting, and maintenance of the platform.

Your data is not shared publicly and is only accessible to authorized users within the platform.

Certain profile information (such as name, role, and country) may be visible to other registered users to facilitate collaboration

International data transfers
Given the global nature of the platform, your personal data may be accessed or processed from countries outside the European Economic Area (EEA).
Where this occurs, appropriate safeguards are in place, such as Standard Contractual Clauses or reliance on adequacy decisions where applicable

7. How long we keep your data

We retain personal data only for as long as necessary:

• User account data: retained while your account is active
• Inactive accounts: reviewed and may be deleted after 12–24 months
• Content (e.g. documents, forum posts): retained as long as relevant to GNRD activities

You may request deletion of your data at any time.

8. Data security

The platform operates as a secure, login-based environment. Access is restricted to approved users, and appropriate technical and organizational measures are in place to protect personal data.

9. Your data protection rights

Under GDPR, you have the right to:

• Access your personal data
• Rectify inaccurate or incomplete data
• Request deletion (right to erasure)
• Restrict processing
• Object to processing
• Data portability
• Withdraw consent at any time

To exercise your rights, please contact us at programme@rarediseasesint.org 

10. Cookies

The platform may use cookies to:

• Maintain login sessions
• Improve user experience
• Understand platform usage

You can control cookies through your browser settings.

12. Changes to this privacy notice

We may update this privacy notice from time to time. Updates will be published on the platform.

Date: 24/03/2026