top of page

Privacy Policy

 

Last updated: 14 August 2026

 

 

Mitrofanoff Support (”we”) are committed to protecting and respecting your privacy.

 

This policy (and any other documents referred to within it) sets out the basis on which any personal information we collect from you, or that you provide to us, will be processed by us. Please read the following carefully to understand our views and practices regarding your personal information and how we will treat it. By providing personal information to us or visiting www.mitrofanoffsupport.org.uk you acknowledge that you have read and understand this Privacy Policy.

 

For the purpose of the The Data (Use and Access) Act 2025 (DUAA), the data controller is Mitrofanoff Support of registered office 61 Bridge Street, Kington, HR5 3DJ.

 

 

INFORMATION WE COLLECT FROM YOU  

 

Information you give to us directly

 

We may collect and store information about you when you interact with us, including via phone or in person. This could include, but not be limited to:

 

  • Register to join our mailing list

  • Fundraise on our behalf

  • Donate to the charity

  • Register for our events (e.g Mitrofanoff Support Days, Online networking events, annual fundraising ball)

  • Provide information for our journal

  • Submit an enquiry

  • Make a complaint

  • Give us feedback

  • Volunteer with us

  • Call our office to ask for information/advice

 

The personal information collected about you may include your name, address, email address and telephone number. Any health-related information that you disclose to us is classed as sensitive personal information and we only collect that where necessary. For example, you may talk about your medical issues in an email about your medical situation in order to get some general advice.

 

COOKIES  

​

 For information about our practices regarding the collection of information through cookies and other tracking technologies (like gifs, web beacons, etc.), please visit our Cookie Policy. 

 

USES MADE OF YOUR INFORMATION  

​

We use personal information held about you in the following ways:

  • Providing you with relevant information as part of you joining our mailing list such as invitations to attend support and education events, our journal and product information, governance documents, etc.

 

  • Enabling us to organise events that you have registered to attend, for example, our annual ball or a patient education day;

  • Administering any one-off or on-going donations you make and claiming Gift Aid;

  • Processing any application for you to volunteer with us;

  • Recording and dealing with any complaints or any requests to remove you from our database or any other internal record keeping;

  • Complying with any legal obligations that We are subject to.

 

We will only retain and use your personal information for as long as necessary for the purposes for which it was collected, taking into account any guidance provided by the UK Information Commissioner’s Office.

 

WHO DO WE DISCLOSURE YOUR INFORMATION TO?

 

We will only share your personal information with the following third parties for the following purposes:

 

  • We may need to share your information with data hosting providers or other service providers who help us to deliver our services, projects and fundraising activities. These providers will only act under our instruction and are obligated by contract to process your personal information appropriately and in accordance with the consent provided.

  • If we are under a duty to disclose or share your personal information in order to comply with any legal obligation or to protect the rights, property, or safety of Mitrofanoff Support, our members or others.  

  • In the event that we merge with another charity, in which case we will disclose your personal information to the prospective charity.

 

WHERE WE STORE YOUR PERSONAL INFORMATION AND HOW WE PROTECT IT  

 

We use (and will procure that our third-party service providers use) technical and organisational safeguards to ensure that your personal information is kept securely. We limit access to the personal information you provide to us or that we collect about you and take appropriate measures to ensure that our people are aware that such information is only to be used in accordance with this privacy policy.

 

We use data processors who are third parties who provide elements of services for us. We have contracts in place with our data processors. This means that they cannot do anything with your personal information unless we have instructed them to do it. They will not share your personal information with any organisation apart from us. They will hold it securely and retain it for the period we instruct. When it is necessary for us to transfer your personal information outside of the UK this will only be done in accordance with the UK GDPR. 

 

Transfers of Information

 

We may transfer your Personal Information outside of the UK only for the purposes described in this policy. Some of these countries are recognized by the UK as providing an adequate level of protection according to UK standards. For transfers from the UK to countries not considered adequate by the UK Government, we have ensured that adequate measures are in place, including by ensuring that the recipient is bound by Standard Contractual Clauses, to protect your Personal Information. You may obtain a copy of these measures by contacting us at legal@mitrofanoffsupport.org.uk.

 

USE OF INFORMATION FOR MARKETING PURPOSES

​

We will not provide your personal information to third parties for marketing purposes. We will only use it to market our charity services to you if you have signed up to our mailing list. You can also exercise your right not to receive our marketing information at any time by contacting us at info@mitrofanoffsupport.org.uk.

​

YOUR DATA PROTECTION RIGHTS

 

You have a right to access your personal information, to object to the processing of your personal information, to rectify, to erase, to restrict, to port your personal information and to withdraw your consent. Any requests or objections should be made in writing by emailing info@mitrofanoffsupport.org.uk.

 

THIRD PARTY WEBSITES

 

Our Site may, from time to time, contain links to and from the websites of our partner networks, advertisers and other charities. If you follow a link to any of these websites, please note that these websites have their own privacy policies and that we do not accept any responsibility or liability for these policies. Please check these policies before you submit any personal information to these websites.

 

AGE RESTRICTION

 

If you are aged 16 or under, please obtain your parent or legal guardian’s consent before you disclose any personal information to us.

 

HOW TO MAKE A COMPLAINT

​

If you are unhappy with the way in which your personal information has been processed, you may in the first instance contact us using the contact details above.

 

If you remain dissatisfied, then you have the right to apply directly to the Information Commissioner for a decision. The Information Commissioner can be contacted at: -

Information Commissioner’s Office,
Wycliffe House,
Water Lane,
Wilmslow,
Cheshire,
SK9 5AF

www.ico.org.uk

 

CHANGES TO OUR PRIVACY POLICY  

​

Any changes we make to our privacy policy in the future will be posted on our website and, where appropriate, notified to you by e-mail.

​

CONTACT  

​

Questions, comments and requests regarding this privacy policy are welcomed and should be addressed to info@mitrofanoffsupport.org.uk.

bottom of page