NSA Privacy Notice

The Noonan Syndrome Association (‘NSA’) is committed to complying with the General Data Protection Regulation and the Data Protection Act 2018, once enacted. Looking after the personal information you share with us is very important and we want you to be confident that your personal data is kept safe and secure.

We have published this notice to help you understand how and why we collect information from you, who we share your information with and why and on what basis and what you rights are.

If we make changes to this notice we will notify you by updating it on our website. Our Charity Manager will be the ‘Data Controller’ of the personal data you provide us and will be responsible for Data protection compliance.

When you subscribe to NSA or complete regular giving mandates we will ask you to provide some personal information such as:

Full Name

Address

Contact Numbers

Email address

Bank Details such as Account Number, Sort Code and Address of Bank

How do we use your information?

Your personal information will only be used to process your requests, to provide you with our services, and to provide you with information relating to our services and all other services which we think you may be interested in.

We store your information securely on our computer system, we restrict access to those who have a need to know, and we train our staff in handling the information securely.

Who we share your information with?

We will take all reasonable precautions to prevent the loss, misuse or alteration of information you give us.

We may however disclose your personal information;

  • if we are under a duty to disclose or share personal data to comply with a legal obligation
  • for law enforcement purposes
  • to apply our terms of use and other agreements or to another agency or to other individuals outside of the charity only with your specific consent and where possible this will be with written consent.

How long do we keep your information?

What are your rights?

You are entitled to request the following from the NSA, these are called your Data Subject Rights and there is more information on these on the Information Commissioners website www.ico.org.uk.

Right of Access – to request to access your personal information and information about how we process it

Right to Rectification – to have your personal information corrected if it is inaccurate and to have incomplete personal information completed

Right to erasure – to have your personal information erased please contact the charity manager by email [email protected]

Right to Restriction of processing – to restrict processing of your personal information

Right to Data portability – to electronically move, copy or transfer your personal information in a standard form. This is only applicable to the following:

  • to personal data an individual has provided to a Data Controller;
  • where the processing is based on the individual’s consent or for the performance of a contract; and
  • when processing is carried out by automated means.

Right to Object – to object to processing of your personal information

Rights with regards to automated individual decision making including profiling – rights relating to automated decision making, including profiling

You have a right to lodge a complaint with the Information Commissioner’s Office (ICO), the data protection regulator in the UK, contact details available in the ICO Website www.ico.org.uk where your personal information has or is being used in a way that you believe does not comply with the data protection act, however we encourage you to contact us before making any complaint and we will seek to resolve any issues or concerns you may have.

The NSA would also like to contact you in future to tell you about other services we provide, to keep you informed of what we are doing and ways in which you might like to support NSA.  You have the right to ask us not to contact you in this way.  We will always aim to provide a clear method for you to opt out.  You can also contact us directly at any time to tell us not to send you any future marketing material.

The easiest way to opt out is to email the charity manager [email protected] with ‘Unsubscribe’ in the subject.

Cookie Policy

This website (https://www.noonansyndrome.org.uk) uses cookies to store information on your computer. Cookies help us to provide you with a better experience of our website.

If you have any questions about the following information please contact [email protected].

Managing cookies

Most web browsers allow you to control the cookies stored on your computer through your browser’s settings. To find out more about cookies, including how to see what cookies have been stored and how to manage and delete them, visit this external site http://www.allaboutcookies.org/

Our use of cookies

We use tools which employ cookies to collect anonymous information about how visitors use our site.

If you are not happy for us to monitor your use of our website, and you do not wish to disable cookies on your browser, then do not use our website.

Third Party Cookies

Google Analytics

We may use Google Analytics to collect information about how people use the website in order that we can improve the experience of our visitors. Google Analytics uses cookies to collect information which includes information about how you found our website, how long you spent on it and what pages you viewed. The information collected is anonymous and does not identify a visitor.

We use the information to compile reports and to help us improve the site.

You can read more about Google Analytics data security and privacy policy and can choose to opt out of being tracked by Google Analytics across all websites.

Removing or disabling cookies

You may choose to remove or block cookies at any time by adjusting your browser settings, but in some cases, this may impact your experience of our website.

If you wish to decline cookies, please see instructions for different browsers on the Information Commissioner’s Office (ICO) website.

On mobile phones, the instructions for deleting cookies will vary depending on the handset. Therefore, please either refer to your handset manual or an internet search for instructions and more information.