Volunteer information guide

We take data security very seriously. We may occasionally ask partner companies to process your data, but only under a very strict contract.  They will not contact you themselves or pass your data to anyone else.

As a volunteer you will hear from the Association with relevant information and news, including our research, campaigning and fundraising activities. You may also receive opportunities to volunteer in other ways from us at both national and local level.  We will normally contact you by email or phone, but may use post, text or social media when it is appropriate to do so.  You may request not to receive certain information but we may continue to send it if the Association believes it is information that you need to know for your role.

We collect demographic information, but only to allow us to monitor our performance against equality, diversity and inclusion targets.  Staff will not routinely have access to this information unless they have specific reasons and appropriate permission to view it.

We will keep your information for as long as you volunteer with us. If you choose to stop volunteering at some point, your information will be archived in case you want to return to volunteering at a later date.  If you don’t want us to hold your information after you stop volunteering, please let us know.  If you have other relationships with the Association, such as being a donor or member, that continue after you have stopped volunteering, your data will continue to be held as long as your relationships with us continue.

Please see our privacy policy for general information on how we use and store your data.

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262