If you are participating in any other ALLIANCE activity such as focus groups, blogs and opinion pieces

Podcasts, opinion pieces, competitions, case studies, social reporting, surveys, campaigns etc. The ALLIANCE will obtain your consent before processing your information.

How your information is handled will depend on each activity and will be in accordance with the consent provided by you.

If we are working with another organisation and need to provide your information to them, you will be notified of this prior to your giving consent.

You should ensure that you understand prior to giving your consent how your information will be used and with whom it will be shared.

You can withdraw your consent at any time but should be aware that if the information is to be made public via reports and social media, the ALLIANCE will be able to only withdraw its future use of your personal information. It will not be able to remove the information from materials and channels already in circulation.

Information collected for these types of activity may be personal and sensitive personal data. You may be asked for you name and contact details, about your condition(s), how you self manage, for your political opinions etc.

The information may be used in reports, newsletters, campaign materials, as training materials, published on social media and our website etc. These will be shared with Government, Parliament, other third sector organisations, the public, our members, event delegates etc. and will be shared internationally.

Whether you will be identifiable from the information will depend on the consent that you provided e.g. if you appeared in a video you will be identifiable from your appearance. If you provided a personal story, blog or viewpoint, for example, you may be identifiable from the content, or from your name if you consented to this, and if you completed an online survey your IP address will have been collected by the third party survey site. Other information may not explicitly identifiable, however, the ALLIANCE cannot guarantee this.

Your personal information will be retained in accordance with the consent you provided. Information that you have consented to being made public will be retained permanently.