This is the Privacy Policy of Narcolepsy Ireland RCN 20203137. The purpose of this Privacy Policy is to ensure that individuals understand how we process their information.

Narcolepsy Ireland endeavours to comply with the General Data Protection Regulation, Data Protection Acts, ePrivacy Regulation and data protection best practices. This Policy informs individuals how Narcolepsy Ireland processes personal data in accordance with the principles of data protection identified in the data protection legislation.

We will process any personal information provided to us by individuals, whether it be provided through our website, through our other social media channels, in person, on a form, correspondence, telephone, email or by any other means, or otherwise held by us in relation to you in the manner set out in this policy.

By submitting your information to us and or by using the Website you confirm your consent to the use of your personal information as set out by this Privacy Policy. If you do not agree with the terms of this Privacy Policy, please do not use the Website or provide us with any personal information.


The information about you that we may collect, use, and store (process) includes:

  • Information you provide to us by filling out any forms or by way of emailing us.

  • Records of correspondences whether by email, telephone, through any online form or by any other means,

  • Information you provide to us in person.

  • Details of any business or commercial transactions you carry out with us, whether through email, the website, telephone, or by any other means.

  • Details of your visits to our website including traffic data, location data, weblogs and other communication data in accordance with our Cookie Policy, that may identify personal information (e.g. cookies) and non-personal information (e.g. information of an anonymised or technical nature).

how we use your personal informatioN

We may use your personal information for the purposes of:

  1. Processing any enquiry requested by you;

  2. Complying with our legal duties and responsibilities;

  3. Providing, monitoring, reviewing and supporting our online presence via our website and social media (please see our Cookie Policy)


Narcolepsy Ireland is a registered charity that relies on the public for support and fundraising.

In terms of data processing, subject to your explicit consent, we may also use your personal information for the purpose of:

  1. Carrying out any membership or customer research, survey and analysis;

  2. Fundraising activities, including event awareness,

Narcolepsy Ireland is committed to privacy by design and privacy by default. As such, you will never have to ‘opt-out’ of our communication or fundraising processes; you will only ever have the option of ‘opting in’ if you’d like to be included. We do not engage in ‘pre-ticked’ boxes on consent forms nor do we ever assume you would consent to your data being processed. Opt-In is done by following us on social media or filling out online forms. You are free to withdraw consent for any communication and or fundraising related matters at any time you want.

social media

Narcolepsy Ireland engages in a number of social media services and we strive to uphold privacy rights online. However, sometimes members of the public may post something objectionable and beyond our control to Narcolepsy Ireland’s social media pages. In such cases, we will act to rectify any difficulties as soon as we are notified or become aware of the problem. We do not provide a continuous monitoring of social media sites/forums so there may be a slight delay from the initial post to when we become aware of a problem.

Narcolepsy Ireland sometimes hold marketing or fundraising events in which members the public may be present. Such events are often held at public locations. Sometimes we may wish to take a photograph at such events to promote our brand or event on social media. In such cases, it is our policy for our photographer/social media handler to announce their presence and provide additional instructions and assistance. However, we do not have any control over private individuals or their social media accounts and we cannot stop members of the public from posting pictures of events online without the consent of all participants.

For information relating to social media usages, cookies or widgets, please see our Cookie Policy


We will take reasonable steps to ensure that your information is kept secure and protected, including but not limited to electronic data being protected using appropriate software, relevant networks safety and security checks, and, where applicable, any physical data records will be kept in an appropriately secure environment.

Personal data that is no longer required will be destroyed and or deleted in a secure manner.

We do not record or process personal data that is not required or not necessary for any of our stated purposes.


We may have to disclose certain personal data in accordance with any legal obligation imposed on us. Any such disclosure would be in accordance with the law, e.g. disclosed on foot of a court order etc.


Any person has the right to find out whether an organisation has any personal data about them, what they use the personal data for and ask for copies of personal information held by that organisation.

If you wish to make a data access request in order to get a copy of any personal data we may process, please


In order to process your request we may request that you send us a copy of your identification (passport, driver’s license, etc.).

The reason we ask for personal identification is to ensure that you are the correct person making the request for your personal data.

Unfortunately, verbal access requests cannot be entertained.

In response to any data access request, you have the right to refer the matter to the Data Protection Commission if you are unhappy with the outcome, however, we ask that you would notify us first of any issue so that we may help resolve it as quickly as possible.


You have the right to rectify any incorrect or inaccurate personal data at no cost to you.

If you believe that we are incorrectly processing any of your personal data, please inform us by emailing


If you have any queries or complaints regarding our Privacy Policy or any data protection matter, please let us know by emailing

Individuals have the right to refer any matter to the Data Protection Commission by contacting them at or by writing to:

Data Protection Commission

Office of the Data Protection Commission

Canal House

Station Road


Co. Laois

If you are, for whatever reason, considering contacting the Data Protection Commission about us we would ask that you inform us of your difficulty first so that we can try to resolve it to your satisfaction.


Any changes we may make to our Privacy Policy in the future will be posted on the website.

Any changes will become effective upon posting the revised Privacy Policy on the website.

Privacy Policy last reviewed: March 2019