Privacy Policy

A legal disclaimer

Privacy Policy

Last Updated: June 2026

The Marfans Research Foundation ("we", "our", or "us") is committed to protecting your privacy and handling your personal information in a transparent and secure manner.

This Privacy Policy explains how we collect, use, and protect personal information when you visit our website, www.marfansresearchfoundation.ie.

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The Marfans Research Foundation is an Irish charitable organisation dedicated to raising awareness of Marfan Syndrome and supporting research into its causes, treatment, and management.

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We may collect personal information that you voluntarily provide to us, including:

• Your name

• Email address

• Telephone number

• Any information you include when contacting us through email or a contact form

We may also automatically collect certain technical information when you visit our website, including:

• IP address

• Browser type and version

• Device information

• Pages visited

• Date and time of access

This information is used to help us maintain and improve our website.

How We Use Your Information

We may use your personal information to:

• Respond to enquiries and requests

• Communicate with you regarding Foundation activities where requested

• Improve our website and services

• Comply with legal and regulatory obligations

We will only process your personal information where we have a lawful basis to do so under applicable data protection laws.

Donations

Our website may contain links to third-party websites that facilitate donations in support of the Marfans Research Foundation.

When you leave our website and visit a third-party donation platform, any personal information you provide, including payment details, will be processed by that third party in accordance with its own Privacy Policy and Terms of Service.

The Marfans Research Foundation does not collect, process, or store payment card information through this website.

We encourage you to review the privacy policies of any third-party websites before providing personal information.

Cookies

Our website may use cookies and similar technologies to improve user experience and analyse website performance.

Cookies are small text files stored on your device. You can control and manage cookies through your browser settings.

Where required by law, we will request your consent before placing non-essential cookies on your device.

Sharing Your Information

We do not sell, rent, or trade personal information.

We may share information with trusted service providers who assist us in operating our website, provided they maintain appropriate confidentiality and security measures.

We may also disclose information where required by law or to protect our legal rights.

Data Retention

We retain personal information only for as long as necessary to fulfil the purposes for which it was collected or to comply with legal obligations.

When information is no longer required, it will be securely deleted or anonymised.

Data Security

We take reasonable technical and organisational measures to protect personal information from unauthorised access, loss, misuse, or disclosure.

However, no method of transmission over the internet can be guaranteed to be completely secure.

Your Rights

Under the General Data Protection Regulation (GDPR), you may have the right to:

• Access your personal data

• Request correction of inaccurate data

• Request deletion of your personal data

• Restrict or object to processing

• Request a copy of your data in a portable format

• Withdraw consent where processing is based on consent

You also have the right to lodge a complaint with the Irish Data Protection Commission if you believe your personal information has been processed unlawfully.

Third-Party Websites

Our website may contain links to external websites. We are not responsible for the privacy practices, content, or security of those websites.

Changes to This Privacy Policy

We may update this Privacy Policy from time to time. Any changes will be posted on this page together with an updated revision date.

Contact Us

If you have any questions regarding this Privacy Policy or the way we process personal information, please contact us through the contact details provided on our website:

www.marfansresearchfoundation.ie