Privacy Policy

1. Information We Collect

We collect the minimum amount of data required to deliver our mission:

• • Contact information supplied voluntarily through collaboration or subscription forms.
• • Professional details such as role, organization, and research interests when users request access to secure workspaces.
• • Usage analytics gathered via privacy-first analytics tools to understand platform engagement.

2. How We Use Information

• • Provide data insights, newsletters, and collaborative opportunities tailored to user interests.
• • Maintain secure access to restricted clinical and research dashboards.
• • Improve user experience, accessibility, and platform resilience.

3. Legal Basis & Consent

We process personal data based on legitimate interests in delivering rare disease information, explicit consent for newsletters and programs, and contractual obligations for collaborations. Users may withdraw consent at any time.

4. Data Sharing & Transfers

We do not sell personal data. Information may be shared with vetted partners solely for program delivery, subject to confidentiality agreements and compliance with GDPR, HIPAA, and relevant regulations. Cross-border transfers rely on standard contractual clauses.

5. Data Security & Retention

We employ encryption, role-based access, and continuous monitoring. Data is retained only as long as necessary for stated purposes or legal requirements. Users can request deletion or updates at any time.

6. Your Rights

• • Access, rectify, or delete your personal data.
• • Object to processing or request data portability.
• • Lodge a complaint with your supervisory authority.

Requests can be sent to jlana55531@gmail.com.

7. Updates

We review this policy annually and post revisions with updated effective dates. Continued use of the platform signifies acceptance of changes.

Last updated: September 2025