Privacy policy

Who is responsible for your data

The data controller is Viljem Julijan Association for Children with Rare Diseases (Društvo za pomoč otrokom z redkimi boleznimi Viljem Julijan), Cesta Leona Dobrotinška 2, 3230 Šentjur, Slovenia, EU, registration number 4107870000. You can reach us at csb@viljem-julijan.si.

What we collect

This website collects personal data only when you choose to send it to us through one of two forms.

Contact form

Name, e-mail address, optional phone number, the reason for contact and the content of your message. We use this data solely to answer you. Legal basis: your consent (GDPR Article 6(1)(a)).

Patient registry form

Contact details of the parents or guardians and information about the child, including diagnosis and a description of the child’s condition. This is health data, a special category of personal data, which we process only on the basis of your explicit consent (GDPR Articles 6(1)(a) and 9(2)(a)) in order to:

• keep a registry of patients with Cockayne syndrome and related rare diseases,
• inform you about research progress and future treatment opportunities,
• connect you with other families — but only if you explicitly agreed to that in the form.

We do not pass personal data to third parties, except to connect families where you have agreed, and except to the service providers listed below, who process data on our behalf.

Who processes data on our behalf

• Netlify – hosting of this website. Server logs (including IP address) are created automatically for security and operational reasons.
• Brevo (Sendinblue, France, EU) – delivery of the e-mail generated by the forms. Form submissions are not stored in any database on this website; they exist only as e-mail in our mailbox and in Brevo’s delivery logs.

Cookies and tracking

This website sets no cookies and uses no analytics, advertising or tracking services. YouTube videos are shown as a still image; the video is loaded from YouTube (youtube-nocookie.com) only after you click play, and only then may YouTube receive data about your visit.

How long we keep data

Messages from the contact form are kept for as long as needed to deal with your enquiry, and no longer than two years. Registry data is kept until you withdraw your consent.

Your rights

You can revoke your consent at any time in writing (to drustvo@viljem-julijan.si). At any time, you can also request access to your personal data, its correction, deletion, restriction of processing, or data portability, by sending a written request to drustvo@viljem-julijan.si. You also have the right to lodge a complaint with the Slovenian Information Commissioner (Informacijski pooblaščenec, ip-rs.si).

Children’s data

Data about children is only ever submitted by a parent or legal guardian, who provides consent on the child’s behalf. Please do not send us medical documentation through the form; if we need it, we will agree on a secure way with you first.