Here at The Maddi Foundation your privacy is important to us. This privacy statement provides information about the personal information that The Maddi Foundation collects, and the ways in which we use that personal information. This privacy statement aims to cover all of our activities.
The Maddi Foundation may change this policy at any time in line with legislative changes or changes to the policy of the organisation. Please check our website from time to time to ensure you are aware of any changes. By using our website or events portal you are agreeing to be bound by this policy.
The Maddi Foundation adheres to the Principles of the Data Protection Act 2018 (UK and relevant European Union Data Protection Directives, including the forthcoming General Data Protection Regulation (GDPR).
In this policy document: “we” or “The Maddi Foundation” means The Maddi Foundation; “you” means any person(s) about whom we collect non-personal and/or personal information.
Who are we?
We are The Maddi Foundation, a UK based charity who is dedicated to funding research into a rare condition called Spastic Paraplegia 15 (SPG15) and associated rare diseases. A charity registered in England and Wales (no. 1174374).
How do we collect information from you?
We obtain information when you use our website or events portal, or contact us by email or social media, for example when you contact us about our services, to make a donation or to sign up for events or activities or if you register to receive our quarterly e-news letter.
What information do we collect?
The personal information we collect might include your name, address, email address, telephone number and IP address, and the information regarding what pages are accessed and when. We collect this data in order to deliver the services and information to you (the beneficiary), to track the success of an event, to measure our impact as a charity, and to deliver financial transparency to both our funders and the charity commission.
If you make a donation online or purchase a product from us, your card information is not held by us, it is collected by our third party payment processors, who specialise in the secure online capture and processing of credit/debit card transactions.
How is your information used?
1. Your browsing: We collect basic information about the users of our website. This information is non-personal. Whenever you access our website we only measure the country location of users.
2. Your contact with us: If you contact us by telephone, e-mail, or by letter, we retain a record of your contact to help us respond to enquiries. We only collect this information if you provide it to us and we do not hold your information for longer than is necessary.
4. Social media: The Maddi Foundation is active on Facebook, Twitter and Instagram. The Maddi Foundation uses social media to advertise an event and to deliver information about the event that you are attending. The Maddi Foundation does not collect data from these social media sources, though we will endeavour to answer messages directed to us through these sources. All messages sent to The Maddi Foundation in this regard are governed by the privacy policies of the chosen platform.
5. Fundraising: We collect the personal information of individuals who take up charity places for The Maddi Foundation fundraising charity events, or who is actively fundraising for The Maddi Foundation. This is collected to allow effective registration, to support you in your fundraising efforts, and to monitor success. We will not contact you about other things without your permission.
7. Our staff and volunteers: We hold personal information about our staff, trustees, advisory board members and volunteers.
8. Grants or job applications: We hold personal information to process a grant or job application.
9. Send you communications which you have requested and that may be of interest to you. These may include information about our research projects, campaigns, appeals and other fundraising activities.
How long do we keep your information?
We keep your information for as long as is necessary to deliver any associated information effectively for you and track our charity impact. Your data will be retained securely in such situations to meet the obligations of our funders and good financial practice.
You have a choice about whether you wish to receive information from us. If you do not want to receive direct communications from us about our research work or fundraising activities, then you can email us at email@example.com
Who has access to your information?
Our members of staff have access to your personal information. If you provide information through involvement with a specific event, that information will also be shared with any organisations that are listed as a project collaborator or co-organiser.
Can you access the information we hold about you?
Yes, you have the right to access information stored about you by The Maddi Foundation. You need to write to us by email us at firstname.lastname@example.org. We will then provide you with the following information: What personal data is stored and the purposes for which your data is being processed and who has access to your data.
Use of ‘cookies’
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Any questions about privacy?
If you have any questions or concerns about how we protect your personal information, please contact us by email email@example.com.
Review of this policy