Privacy Policy

Contact Details

Name: PKU Association of Ireland (pku.ie)
E-mail: info@pku.ie
Address: 9 Kelly Bay Rocks, Skerries, Co Dublin

This notice outlines how PKU Association of Ireland (PKUAI) collects and uses personal data as the data controller.

Personal Information We Collect

We collect:

First and last name
Email address
Contact phone number

How We Collect It

Data is provided directly when:

You consent at a PKUAI meeting
You contact PKUAI by email with a request
You share data via social media

We do not collect personal information from third parties or share it externally.

Why We Use Your Data

To:

Inform you about PKUAI activities and invite participation
Share PKU-related news, including updates on therapies and product availability
Contact you about research and public-patient involvement opportunities

Our lawful basis: Consent You can withdraw it at any time by emailing info@pku.ie

Data Storage

Your data is securely stored on a dedicated, password-protected PKUAI laptop maintained by an admin, with antivirus protection and cybersecurity oversight by EVAD (your data was never shared with them). We retain data only as long as necessary and may contact you periodically to reconfirm consent.

Your Rights

You may:

Access your data
Request corrections or deletion
Restrict or object to processing
Request data portability

To exercise your rights, email info@pku.ie. There is no fee, and we aim to respond within one month.

Complaints

If you're unhappy with our data use, contact us or lodge a complaint with:

Data Protection Commission
21 Fitzwilliam Square South, Dublin 2
Phone: (01) 765 0100 / 1800 437 437
dataprotection.ie