Privacy Policy

Who we are

The Marfan European Network (MEN) is a collaboration of patient organisations and individuals working to improve awareness, education, support, and advocacy for people affected by Marfan syndrome and related conditions throughout Europe.

What Information We Collect

Currently we are not collecting any data of our visitors.

Lawful Basis for Processing

Under the General Data Protection Regulation (GDPR), we process personal data on the basis of:

  • Compliance with legal obligations where applicable
  • Consent 
  • Legitimate interests 

Sharing Information

We do not sell personal information.

Information may be shared with trusted service providers who help us operate the website, distribute communications, or manage technical services, provided appropriate data protection safeguards are in place.

International Transfers

Where data is processed by third-party providers outside the European Economic Area (EEA), appropriate safeguards will be used in accordance with GDPR requirements.

Data Retention

Personal information will be retained only for as long as necessary to fulfil the purpose for which it was collected or to comply with legal obligations.

Your Rights

Under GDPR, you have the right to:

  • Lodge a complaint with your national data protection authority 
  • Access your personal data 
  • Correct inaccurate information 
  • Request deletion of your information 
  • Restrict or object to processing 
  • Withdraw consent at any time 

Cookies

This website may use cookies and similar technologies to improve functionality and understand website usage.

Visitors can manage cookie preferences through their browser settings.

Medical Information

The Marfan European Network does not provide medical advice, diagnosis, or treatment.

Information provided on this website is for educational and informational purposes only and should not replace consultation with a qualified healthcare professional.

Contact

For questions regarding this Privacy Policy or your personal information, please contact:
Marfan European Network
marfan.eu

Changes to This Policy

This Privacy Policy may be updated from time to time. Any revisions will be published on this page.

The Marfan European Network provides information and support but does not provide medical advice or clinical services.