Turner Contact Group Ireland

Information, resources and support for those affected by Turner Syndrome.

Privacy Policy

Privacy Policy for Turner Contact Group Ireland

Last Updated: July 2025

Turner Contact Group Ireland (“TCGI”, “we,” “us,” or “our”) is committed to protecting your privacy and personal data. This Privacy Policy explains how we collect, use, store, and disclose your personal data when you visit our website (https://www.tcgi.ie) and interact with our services.

We are registered in Ireland and operate in accordance with the General Data Protection Regulation (GDPR) (EU) 2016/679 and the Data Protection Act 2018.

1. Who We Are

Turner Contact Group Ireland is a registered charity dedicated to providing information, resources, and support for individuals affected by Turner Syndrome, their families, and carers in Ireland.

Our Contact Details:

  • Name: Turner Contact Group Ireland (TCGI)
  • Email: info@tcgi.ie
  • Website: https://www.tcgi.ie

2. What Personal Data We Collect

We may collect and process various types of personal data, depending on how you interact with our website and services.

a. Information You Provide to Us Directly: This includes personal data you voluntarily provide when you:

  • Contact us: Via email, contact forms, or phone. This may include your name, email address, phone number, and the content of your message.
  • Sign up for our newsletter/mailing list: Your email address and potentially your name.
  • Register for events or workshops: Your name, contact details, and any specific requirements you may have (e.g. dietary, accessibility needs).
  • Become a member: Name, address, contact details, and any other information required for membership administration.
  • Make a donation: Your name, contact details, and payment information (though payment processing is typically handled by third-party processors – see Section 5).
  • Participate in surveys or provide feedback: Any information you choose to provide.

b. Information Collected Automatically (Cookies and Usage Data): When you visit our website, we may automatically collect certain information about your device and Browse activity using cookies and similar technologies. This may include:

  • Your IP address
  • Browser type and version
  • Operating system
  • Referring website
  • Pages you view on our website
  • Date and time of your visit
  • Time spent on certain pages

c. Sensitive Personal Data: We do not intentionally collect sensitive personal data (e.g., health information, racial or ethnic origin, religious beliefs, sexual orientation) unless it is explicitly and voluntarily provided by you, for a specific purpose, and with your explicit consent (e.g., if you choose to disclose health information when seeking support or attending a support group). If we collect such data, we will do so with the utmost care and in accordance with GDPR Article 9.

3. How We Use Your Personal Data

We use your personal data for the following purposes, based on the specified lawful bases under GDPR:

  • To provide information and support: To respond to your inquiries, provide resources, and offer support related to Turner Syndrome (Legitimate Interest; Consent where sensitive data is involved).
  • To administer our services: To manage your membership (if applicable), process event registrations, and deliver newsletters (Contract; Legitimate Interest).
  • To process donations: To acknowledge donations and maintain donor records (Legal Obligation; Legitimate Interest).
  • To improve our website and services: To understand how our website is used, identify areas for improvement, and enhance user experience (Legitimate Interest; Consent for non-essential cookies).
  • To send communications: To send you updates, news, and information about our work, events, and fundraising activities, where you have consented to receive such communications (Consent).
  • To comply with legal obligations: To meet our regulatory and legal requirements (Legal Obligation).
  • For safeguarding purposes: Where necessary to protect the vital interests of individuals, or for public interest reasons, in line with our safeguarding policies (Vital Interests; Public Interest).

4. Our Lawful Bases for Processing

Under GDPR, we rely on the following lawful bases for processing your personal data:

  • Consent: Where you have given clear consent for us to process your personal data for a specific purpose (e.g., signing up for a newsletter). You have the right to withdraw your consent at any time.
  • Contract: Where the processing is necessary for a contract we have with you, or because you have asked us to take specific steps before entering into a contract (e.g., membership administration).
  • Legal Obligation: Where the processing is necessary for us to comply with the law (e.g., financial reporting, reporting to Charities Regulator).
  • Vital Interests: Where the processing is necessary to protect someone’s life (e.g., in an emergency situation).
  • Legitimate Interests: Where the processing is necessary for our legitimate interests or the legitimate interests of a third party, provided those interests are not overridden by your fundamental rights and freedoms (e.g., improving our services, preventing fraud, direct marketing where a legitimate interest assessment has been conducted). We will always conduct a legitimate interest assessment before relying on this basis.
  • Public Interest: Where processing is necessary for the performance of a task carried out in the public interest (e.g. in specific circumstances related to safeguarding or public health).

5. Sharing Your Personal Data

We will not sell or rent your personal data to third parties. We may share your personal data with:

  • Service Providers: Trusted third-party service providers who assist us in operating our website, conducting our business, or providing services to you (e.g., website hosting, email service providers, payment processors, analytics providers). These providers are contractually obligated to protect your data and only use it for the purposes we specify.
  • Professional Advisors: Our legal, accounting, or other professional advisors where necessary.
  • Law Enforcement or Regulatory Authorities: If required by law, court order, or to cooperate with regulatory investigations.
  • Other organisations within the Turner Syndrome community: With your explicit consent, we may share anonymised or aggregated data, or with your direct permission, specific information, to collaborate on initiatives or research beneficial to the Turner Syndrome community.

International Transfers: We generally do not transfer your personal data outside the European Economic Area (EEA). If, for any reason, we need to transfer your data outside the EEA, we will ensure appropriate safeguards are in place, such as standard contractual clauses approved by the European Commission, or by ensuring the recipient country has been deemed to provide an adequate level of protection by the European Commission.

6. Data Security

We take the security of your personal data seriously. We implement appropriate technical and organisational measures to protect your data from unauthorised access, alteration, disclosure, or destruction. These measures include:

  • SSL/TLS encryption for our website
  • secure servers
  • access controls 
  • staff training on data protection

While we strive to protect your personal data, no method of transmission over the internet or method of electronic storage is 100% secure. Therefore, we cannot guarantee absolute security.

7. Data Retention

We will retain your personal data only for as long as necessary to fulfil the purposes for which it was collected, including for the purposes of satisfying any legal, accounting, or reporting requirements.

To determine the appropriate retention period for personal data, we consider the amount, nature, and sensitivity of the personal data, the potential risk of harm from unauthorised use or disclosure of your personal data, the purposes for which we process your personal data and whether we can achieve those purposes through other means, and the applicable legal requirements.

8. Your Data Protection Rights

Under GDPR, you have the following rights concerning your personal data:

  • The right to be informed: You have the right to be informed about how your personal data is collected and used (this Privacy Policy serves this purpose).
  • The right of access: You have the right to request a copy of the personal data we hold about you.
  • The right to rectification: You have the right to request that we correct any inaccurate or incomplete personal data we hold about you.
  • The right to erasure (“the right to be forgotten”): You have the right to request that we delete your personal data in certain circumstances.
  • The right to restrict processing: You have the right to request that we restrict the processing of your personal data in certain circumstances.
  • The right to data portability: You have the right to receive your personal data in a structured, commonly used, and machine-readable format and to transmit that data to another controller.
  • The right to object: You have the right to object to the processing of your personal data in certain circumstances, particularly where we are processing based on legitimate interests or for direct marketing.
  • Rights in relation to automated decision-making and profiling: You have the right not to be subject to a decision based solely on automated processing, including profiling, which produces legal effects concerning you or similarly significantly affects you. (We currently do not engage in automated decision-making or profiling).

To exercise any of these rights, please contact us using the details provided in Section 1. We will respond to your request within one month.

9. Complaints

If you have concerns about how we are handling your personal data, please contact us in the first instance at info@tcgi.ie

You also have the right to lodge a complaint with the Data Protection Commission (DPC), the supervisory authority for data protection in Ireland.

Data Protection Commission Contact Details:

  • Website: www.dataprotection.ie
  • Address: 21 Fitzwilliam Square South, Dublin 2, D02 RD28

10. Changes to This Privacy Policy

We may update this Privacy Policy from time to time to reflect changes in our practices or for other operational, legal, or regulatory reasons. We will post any changes on this page and update the “Last Updated” date at the top of the policy. We encourage you to review this Privacy Policy periodically.