Privacy Notice

ÉNDpae is committed to respecting your privacy. We take privacy, security and complying with data protection and privacy laws seriously. This notice provides you with the necessary information regarding your rights and obligations, and explains how, why and when we collect and process your personal data.

Who We Are

ÉNDpae is an all-island parents’ and carers’ support group dedicated to supporting people affected by NDpae and their families. It also promotes education for professionals and public awareness of the condition. ÉNDpae registered office is at Unit B9, Enterprise Fund Business Centre, Ballyraine, Letterkenny, Co Donegal and we may be contacted at

Information We May Collect

ÉNDpae processes your personal information to provide you with our services and support.  We will never collect any unnecessary personal data from you and do not process your information in any way, other than already specified in this notice.

The personal data that we collect:

  • Name
  • Age
  • Address
  • Email
  • Contact Number
  • Special Category Data (e. health/medical information, etc.)
  • Other information that is relevant to the provision of our services.

How We Use Your Personal Data

ÉNDpae takes your privacy very seriously and will never disclose, share or sell your data without your consent, unless required to do so by law.  We only retain your data for as long as is necessary and for the purposes specified in this notice.  Where you have consented to us providing you with updates on events you are free to withdraw consent at any time.  

Your Rights

You have the right to access any personal information that ÉNDpae processes about you and to request information about: –

  • What personal data we hold about you
  • The purposes of the processing
  • The categories of personal data concerned
  • The recipients to whom the personal data has/will be disclosed
  • How long we intend to store your personal data for
  • If we did not collect the data directly from you, information about the source


If you believe that we hold any incomplete or inaccurate data about you, you have the right to ask us to correct and/or complete the information and we will strive to update/correct it as quickly as possible; unless there is a valid reason for not doing so, at which point you will be notified.

You also have the right to request erasure of your personal data or to restrict processing in accordance with data protection laws. If we receive a request from you to exercise any of the above rights, we may ask you to verify your identity before acting on the relevant request; this is to ensure that your data is protected and kept secure.

Sharing and Disclosing Your Personal Information

We do not share or disclose any of your personal information without your consent, other than for the purposes specified in this notice or where there is a legal requirement. 

Safeguarding Measures

ÉNDpae takes your privacy seriously and we take every reasonable measure and precaution to protect and secure your personal data.

Consequences of Not Providing Your Data

You are not obligated to provide your personal information to ÉNDpae, however, as this information is required for us to provide you with our services, we may not be able to offer some/all of our services.

How Long We Keep Your Data

ÉNDpae retains your personal data for as long as necessary to provide you with our services. 

Special Categories Data (if applicable)

Owing to the services that we offer, ÉNDpae sometimes needs to request sensitive personal information from you. Where we collect sensitive personal data, we will only request the information required for the specified purpose.

Lodging A Complaint

ÉNDpae only processes your personal information in compliance with this privacy notice and in accordance with the relevant data protection laws. If, however you wish to raise a complaint regarding the processing of your personal data or are unsatisfied with how we have handled your information, you have the right to lodge a complaint with the appropriate supervisory authority.

Republic of Ireland:

Northern Ireland:

Changes to our privacy notice

ÉNDpae may change this notice from time to time. All changes will be posted and updated here. We will notify you directly by email (if we hold one for you) if any significant changes occur. We advise you to check back here frequently to review the most current version of this notice.

This Statement was last updated on February 2020

ÉNDpae registered office is at Unit B9, Enterprise Fund Business Centre, Ballyraine, Letterkenny, Co Donegal and we may be contacted at