PSPA Ireland Privacy Notice

PSPAssociation Ireland CLG (PSPA Ireland) is committed to protecting and respecting your privacy.

The purpose of this Privacy Notice is to explain when and why we collect personal information, how we use it and the conditions under which we may disclose to others and how we keep your information secure.

We reserve the right to modify this Privacy Notice. Notice will be advised on our homepage when any updates are made –Please check any updates to ensure you are happy with the content.  Your continued use of this service constitutes your agreement to this Privacy Policy and any subsequent updates

Any questions about this policy contact

About Us

PSPA Ireland is an Irish based charity that provides support to people with Progressive Supranuclear Palsy (PSP) and Corticobasal Degeneration (CBD) their families and friends.

PSPAssociation Ireland CLG is a company limited by guarantee. Registered in Ireland. Registration number 551954 more commonly known as PSPA Ireland Registered in Ireland (Registration Number 531643). It has charity status:  Registered Charity Number 20102210.

Registered Address: PSPA Ireland. Carmichael House, 4, North Brunswick Street, Dublin 7 D07RHA8.

How we collect information

We obtain information when you use our website, when you apply for membership, to receive emails, Newsletter, contact us by phone, make a donation, sign up to do fundraising , contact us for support or services.

Information that we might collect.

The type of personal information we collect might include name, address, email address, IP address etc. Depending on the contact with us we may capture sensitive personal details (i.e. about your illness and diagnosis,) or fundraising, volunteering or support interest. It is your responsibility to get consent from other individuals if you are contacting us on their behalf or with respect to them. Should you contact us by phone, email, or post or any other method we may hold the content, contact details and any additional information you provide to us. We only collect information that is necessary and for the purpose it was intended. We comply with the Data Protection Regulations and make every reasonable effort to keep you data safe.

If you make a donation on line your card details are not collected or retained by us. It is collected by a third party payment processor, with secure capture and processing procedures in place.  Those organisation will have their own privacy policy in place which will protect your rights.

How we use your information.

We might use your information for the following purposes:

  • Register your membership and process applications
  • Send you information that you requested
  • Send you information that might be of interest to you about PSPA Ireland, our services and support and activities.
  • To notify you about appeals, campaigns, surveys, research.
  • Send you information about volunteering opportunities and projects.
  • Process donations, orders, bookings or payment
  • Ask for you input, opinion ,
  • Notify you of updates
  • Process a volunteering opportunity
  • Carry out surveys, data analysis for research purposes, represent member interest in policy development and advocacy issues

We only store data that is required under law to fulfil our statutory obligations. A review of data retention periods is part of our data management procedures. Data is not stored for longer than necessary.

Who has access to your personal information?           

We will not sell or rent your personal information to third parties or share your information for marketing purposes.

Sharing your personal information

PSPA Ireland does not share your personal information with any third party except as necessary to operate services and to fulfil legal and statutory obligations. We only share your personal information with third parties when they are providing a service on our behalf (e.g. donations, mailings). We will take steps to ensure they protect your information by reviewing their policies and compliance procedures.

The only other time we will share information is if you ask us to act on your behalf and have given your consent to share your information. This might be with a medical professional or service provider.

When you use our secure online donation page, your donation is processed by a third party payment processor, who specialises in secure online capture and processing of credit/debit card transactions.

Choice to opt out

You can opt out of receiving information from us at any time by emailing

Surveys help us to design services and supports around you. They also help us to gain insight into your experiences of living with these neurological conditions and aid research and understanding. We would love you to take part and help us progress the information bank on this disease but you have every right to opt out of any survey we carry out.

Accessing and updating your information.

We are legally obliged to keep your information updated and relevant and to correct any inaccuracies. This is important for you and for us to ensure you receive the service you expect. If you believe that any of your contact details may have changed (contact address/ email address/ name of main contact) is incorrect or needs updating please contact us.  PSPA Ireland, Carmichael House 4, North Brunswick St. Dublin 7. D07RHA8 or

You have a right to ask us for a copy of any information we hold on you. A Data Access Form can be provided on request. This form should be filled out and returned to us for processing. You will be requested to provide information or detail to identify yourself to us and help us locate all information the Association may hold on you.

Security Precautions

We do our best to protect your personal information but you need to be mindful too. The email system can never be guaranteed 100% secure. When using the internet the closed lock icon indicates you are on a secure site. Any transmission is at your own risk. If you wish to discuss anything of a sensitive nature you might prefer to telephone or contact us by post.

Once we receive your data it is treated respect. We secure that information using appropriate technical and physical measures to protect your information from unlawful destruction, loss, alteration, unauthorised disclosure or access. All persons working with PSPA Ireland with access to personal information must adhere to our Data Protection Policy. Any misuse of customer information is subject to disciplinary action.

We do not collect credit card/debit card information. Monies may be collected on or on our behalf. We only work with companies that protect your data and comply with laws to encrypt and protect your data.

We will continue to revise policies and implement additional software as new technologies become available.


Under GDPR data must be minimised. Data cannot be retained once the initial purpose for which it was collected ceases. There must have a defined policy on retention times for all items of personal data.

We keep work relation files for 7 years.

We usually keep membership data on file for the duration of the purpose for which it is provided plus a period there after (usually 10 years).

Other documentation financial, legal documentation is retained according to statutory requirements.

When you unsubscribe to communications we delete your data immediately and confirm this in a final response.

Cookies & Links

Cookies are small pieces of information sent by a website to your computer to allow the website to recognise you when you visit and enhance your experience.  They may be used to collect information about your browsing and what you react to but they do not identify you as an individual. It is possible to turn off the cookies by using your browser preference but this may reduce the functionality of the website.

You may find links on our website. If you click on these you are leaving our site. The responsibility lies with you as a user to ensure that you are happy with using the site you visit. Our privacy policy only applied to our site. We are not responsible for the privacy policies and practices of links from our site or links to/ from third party sites.

Under 16

We are obliged to get consent before engaging with persons under 16.  Please ask your parent/guardians permission before you provide us with any personal information.

Transferring Information outside the EU

We store data centrally. If you use our service while you are outside the European Union, your information may be transmitted outside the EU in order to allow you access. Please be aware that the privacy policies or data protection may not protect your rights to the same extent and you may have less control over what will happen you data.


If you wish to make a complaint please contact Manager at
We will investigate it further and work towards a satisfactory resolution.

If the situation cannot be resolved at this stage the person has the right to make a complaint to the Data Protection Controller