This policy sets out how myaware uses and protects your personal information, including data from your use of our website.

Myaware is committed to protecting your personal information, being transparent about what we hold and ensuring that we use it in accordance with applicable laws concerning data protection. Our ICO registration number is Z719274X.

We do not trade personal data for commercial purposes and will only disclose it if required by law, or if it is with your consent. Myaware uses providers based in the European Economic Area to process personal data.

This policy is reviewed regularly to ensure we are adhering to the General Data Protection Regulation (GDPR), which came into force on the 25th May 2018.

Please email us at [email protected] for any data protection queries.

Read more about the information we process and store:

Members, Donors, Volunteers and Fundraisers

What we collect

As we get to know you, we will collect the following types of information:

  • Name and title/s
  • Full postal address
  • Your date of birth
  • Your gender
  • Contact information such as email address and telephone number
  • Current and previous occupation
  • The type of myasthenia you have and your age when diagnosed
  • The type of myasthenia and age when diagnosed of your friend and relative
  • Any feedback or special requirements that you may choose to give us

How much of the information we collect depends on the type of relationship you have and the information we build in the course of your relationship with us.

What we do with the information we collect

We will use your information to:

  • Provide you with our services, products, and information.
  • Administer your contact details and give you the opportunity to change your preferences as well as amend errors and update your data
  • Keep a record of your relationship with us (including your feedback)
  • Manage donations (including processing Gift Aid)
  • Support your fundraising activities and events
  • Analyse it in our database for statistical review purposes (looking at patterns of myasthenia such as age, geography, occupation or gender)
  • Help us to improve our products and services
  • Ensure we know how you prefer to be contacted
  • Flag your record data - for example if you request to be removed from certain mailing lists, opt out of any specific data processing, or if you have special requirements

We need to keep the details of financial transactions for seven years after the financial year of a donor's last gift, in the event of an audit or gift aid enquiry.

If you say that you would like to hear from us, you will be added to our mailing list and will receive regular updates on news, events and fundraising activities. You can choose to be contacted by post, email, telephone and / or text.

You can change your contact preferences at any time, by telephoning us on 01332 290 219 or by contacting us by email at [email protected].

How we keep your information safe

We transfer all personal information to our own database which is EU hosted. This system is kept updated with your contact preferences. We do not store sensitive personal information that you share with us unless there is a clear and valid reason for doing so.

We are committed to ensuring that your information is secure. In order to prevent unauthorised access or disclosure, we have put in place suitable physical, electronic and managerial procedures to safeguard and secure the information we collect.

Visitors to our website

When you visit www.myaware.org we use a third-party service, Google Analytics, to create a "cookie" on your computer, mobile or other device.

A cookie is a small file containing an ID number which is used to uniquely identify your browser and track each site you visit that has Google Analytics enabled.

We use cookies to determine the number of people using our site and to better understand how they find and use our web pages. This helps us analyse data about web page traffic and improve our website in order to tailor it to customer needs. We only use this information for statistical analysis purposed and then the data is removed from the system.

If we do want to collect personally identifiable information through our website, we will be up front about this. We will make it clear when we collect information and will explain what we intend to do with it.

Overall, cookies help us provide you with a better website, by enabling us to monitor which pages you find useful and which you do not. A cookie in no way gives us access to your computer or any information about you, other than the data you choose to share with us.

You can choose to accept or decline cookies. Most web browsers automatically accept cookies, but you can usually modify your browser setting to decline cookies if you prefer. This may prevent you from taking full advantage of the website.

Your rights

As an individual whose personal data is processed by myaware you have the following right:

  • The right to be informed
  • The right to access the data we hold about you
  • The right to object to direct marketing
  • The right to object to processing carried out on the basis of legitimate interests
  • The right to erasure (in some circumstances)
  • The right to data portability
  • The right to have your data rectified if it's inaccurate
  • The right to have your data restricted or blocked from processing

To exercise any of these rights, please contact us at [email protected] or telephone our head office on 01332 290 219.