Privacy Policy

Introduction

We at the Sodium Valproate Inquiry (“The Inquiry”, “we”, “our”, “us”) respect your right to privacy. We will comply with our obligations under the EU Regulation 2016/679 (General Data Protection Regulation or “GDPR”) and the Data Protection Act, 2018 and all applicable data protection legislation.

The purpose of this Website Privacy Policy is to outline how we deal with any personal data that you provide to us while visiting this website.

If you are not happy with this Website Privacy Policy, you should not use this website. By visiting this website, you are accepting the terms of this Website Privacy Policy.

Any external links to other websites are clearly identifiable as such and the Inquiry is not responsible for the content (or the privacy policies) of those other websites.

The Inquiry aims to be clear and transparent about the information we collect about you and how we will use that information.

This policy will set out the following:

  • The Data Controller
  • The Data Protection Officer (DPO)
  • What Personal Data we Collect
  • What we use your Personal Data for
  • How long will we hold onto your Personal Data
  • Who will have access to your Personal Data
  • International data transfers
  • Your Rights
  • Complaints

The Data Controller

 The Chair of the Inquiry is the Data Controller for all personal data which is collected and used by this website.  A Data Controller is the legal entity which determines how and why personal data is collected and used. 

What personal data do we collect?

 Personal data means any information relating to you which allows the Inquiry to identify you, such as your name & address, contact phone numbers and email address.

Most areas of the website can be accessed by you without the need for you to provide any of your personal data. Some areas, though, require you to submit your name, email address, and other contact  and personal details, for example when you use the Contact Us enquiry form.

The Inquiry may collect and use the following personal data about you: 

  • Your name, address, contact telephone number, and email address and date of birth. The Contact Us form also requires confirmation as to whether you have a diagnosis of FVSD, or are on the diagnostic pathway, or are a family member of a person effected by FVSD or other.
  • Your IP address
  • Information about your use of this website
  • We will handle any data you share with us in line with the General Data Protection Regulation (GDPR).

What we use your Personal Data for

Any personal data we collect from you on this website will only be used by us for the following purposes:

  • To contact you if you have provided your details for this purpose
  • To provide you with a better user experience
  • To keep our website secure
  • Analysis of visitor traffic to, and usage of, our website
  • To gain your feedback on this website

The Inquiry will not use the data we collect about you on the www.sodiumvalproateinquiry.ie website for any other purposes without first contacting you and seeking your consent.

How long will we hold onto your Personal Data

The Inquiry will only retain your personal data for as long as it is necessary to fulfil the purpose it is being processed for.

When we no longer need your personal data, we will securely delete or destroy it or it may be archived in accordance with the National Archives Act 1986 as amended.

Who will have access to your Personal Data

Only staff from the Inquiry team will be able to access your data.

Will my personal data be transferred outside of the European Union?

We do not transfer any personal data about you outside the EEA.

Making a complaint

The Inquiry’s Data Protection Officer (DPO) can be contacted directly, here: dataprotection@svinquiry.ie.

The Data Protection Commission is located at 21 Fitzwilliam Square South
Dublin 2, D02 RD28.

Website Contact Us from users

If you get in touch with us through the contact form on our Inquiry website, we save the details you share with us on our database. The Inquiry uses the data that you give, to make contact with you to discuss any queries you may have. We also use the data to send our response to you by email, post or by telephone call. This way, if we get in touch with you in future, we can refer to our previous conversations and interactions. We will not contact you or share your details without asking for your consent.

Changes to this policy

This Policy may be updated from time to time in the light of operational experience and changes in legislation or technology.

The Inquiry will ensure that the most up to date version of its Website Privacy Policy will be posted on this website so you are always aware of what information we collect, how we use it and under what circumstances, if any, we disclose it.

If you have any queries in relation our use of your data you may contact our Data Protection Officer at the details below:

Email: dataprotection@svinquiry.ie

Address: Sodium Valproate Inquiry, 7/8 Mount Street Upper, Dublin 2