Privacy Statement

Preservation of your privacy is important to the Say Aphasia charity and we are committed to letting you know how we use your personal information and to making only responsible use of your data.

References to “we”, “us”, “you” or “our” in this privacy statement are references to the Say Aphasia, a charity registered in England and Wales, registered charity number: 1169933.

This statement relates to the various contact types associated with the Say Aphasia, including members, individual contacts of members, supporters, mentors and mentees.

  1. What personal data we collect

The Say Aphasia is a membership organisation and as a result, we collect details about your charity when it registers as a member. In addition, we also ask for some basic personal information from you as an individual, in the following situations:

  • As the contact of the Say Aphasia charity you are registering as a member.
  • If you sign up as a supporter of the Say Aphasia.
  • If you sign up to become a mentor for the Say Aphasia.

This information will include your full name, job title, email address and phone number. We also may ask for some non-personal data (e.g. how you heard about the Say Aphasia or the services you are interested in).

You are responsible for making sure you give us accurate and up to date information. If you provide information on behalf of another person, you will need to tell them how to find this privacy statement and make sure they agree to us using their information for the purposes set out in it.

We will also collect personal data when you access the services we offer. Depending on the service you use, the way we collect data is including but not limited to the following:

  • Downloadable resources – name and email address.
  • Support line – name, email address, organisation, job title and query details.
  • Event sign up – name, email address, job title, organisation, location, photograph consent for all events and payment details for paid events only.
  • Mentee sign-up – name, email address, job title, organisation and query details.
  • Online feedback or research surveys – name, organisation and email address.

In all instances where we collect the data from individuals it’s in order to deliver our charitable services.

  1. How we use your personal data

We use your personal information to manage your membership account on our customer relationship management system and/or to provide the services you have requested from us. We never share your information with third parties, unless it is necessary to deliver the service you have requested from us. Primary examples of this include, but are not limited, to:

Sharing data with our event venues for security and safety purposes, or to ensure our accessibility obligations are met.

  • Sharing data with our external event staff or volunteers, including our trainers.
  • Sharing data with your mentor if you have signed up for the mentoring programme.
  • Sharing your data with an expert referral partner if you have contacted our support line.

We never share your information with third parties for marketing purposes without asking for specific, unambiguous consent. For example, some of our events are delivered alongside a relevant partner (e.g. community voluntary service organisations). On some occasions, we might ask you if we can share those details with the partner. This will be very clear on the event sign up form. If in any case, this consent is not received then your data will not be shared.

From time-to-time, we may use your feedback and attribute it to you (e.g. by quoting a name and organisation alongside the feedback). We take this information from the surveys you are asked to complete and we do so to talk about our services publicly or demonstrate the impact of the charity to key stakeholders e.g. funders. We never share your information without asking for specific, unambiguous consent. This will be very clear on the relevant forms you complete. If in any case, this consent is not received then your data will not be shared.

Your data may also be available to our website provider to enable us and them to deliver their service to us, carry out analysis and research on demographics, interests and behaviour of our users and supporters to help us gain a better understanding of them to enable us to improve our services. This may include connecting data we receive from you on the website to data available from other sources. Your personally identifiable data will only be used where it is necessary for the analysis required, and where your interests for privacy are not deemed to outweigh their legitimate interests in developing new services for us. In the case of this activity the following will apply:

  1. Your data will be made available to our website provider
  2. The data that may be available to them include any of the data we collect as described in this privacy policy.
  3. Our website provider will not transfer your data to any other third party, or transfer your data outside of the EEA.
  4. They will store your data for a maximum of 7 years.
  5. This processing does not affect your rights as detailed in this privacy policy.
  1. Member communications

As a member of the Say Aphasia, you will receive regular, relevant communications from us (e.g. a monthly digest and an events bulletin). Signing up as a member, supporter or mentor includes automatic subscription to these communication channels. From time to time, we may also contact you to ask you to engage with various campaigns we run on behalf of Say Aphasia charity.

You have the right to withdraw your consent from receiving our communications at any time. For more information, see section 4 below. You can unsubscribe from communication channels without affecting your membership status with the Say Aphasia.

  1. Your rights to be informed

To update your data

If you wish to access or rectify personal data that has been collected (see section 1 for examples) or if you wish to receive any personal data we hold on you, please contact [email protected] and we will respond to your request within one calendar month.

To delete your data

If you wish to have your data removed entirely from our records, please contact [email protected] and we will respond to your request within one calendar month.

Please note that for legal reasons we are required to keep financial/transactional records for a minimum period of six years from the end of the financial year in which the transaction was made.

To move your data

If you wish to have your data transferred from the Say Aphasia to another organisation, please contact [email protected] and we will respond to your request within one calendar month.

To withdraw your consent

If you wish to withdraw your consent from receiving our email communications, this can be done by clicking ‘update your preferences’ or ‘unsubscribe’ at the bottom of an email you receive from us.

Please note that this does not apply to emails sent by the Say Aphasia services team which relate directly to the service you have requested or purchased, these emails may not have an unsubscribe function. However you can reply to these emails at any time with any concern or questions about your personal data.

To object to, or restrict data processing

If you object to the processing of your personal data, or wish to restrict the way in which it is processed by us, please contact [email protected] and we will respond as soon as possible. Please note that this may affect our ability to deliver our services to you.

  1. How long we retain your data

We retain your personal data for as long as is considered necessary for the purpose for which it was collected (including as required by applicable law or regulation, typically 6 years). In addition, personal data may be securely archived with restricted access (and other appropriate safeguards) where there is a need to continue to retain it.

We will ask you on a regular basis to update your membership details with the Say Aphasia.

Financial records, including those of event payments and refunds, will be retained for a minimum period of six years from the end of the financial year in which the booking was made in order to comply with statutory obligations.

  1. Questions or complaints

If you have questions or a complaint about the way your personal data has been processed by the Say Aphasia, please email [email protected] and we will look in to this for you as a matter of priority.

If you wish to take your complaint further, you can contact the Information Commissioner’s Office (ICO), which is the independent regulatory authority who exist to uphold information rights in the UK. For more information, visit their website or call their helpline on 0303 123 1113.

  1. Changes to our privacy statement

Updates to this privacy statement will appear on this website. This privacy statement was last updated on 28/02/2019.