Privacy Statement - Data

More about how TOFS collects, stores, and uses your data.

Where we collect information about you

We collect information in the following ways:

when you give it to us DIRECTLY: you may give us your information to become a member, book on to an event, provide a story for our newsletter, donate, participate in fundraising activities, share your photos, or communicate with us. You may also link to us or tag us in social media.

when you give it to us INDIRECTLY: your information may be shared with us by independent event organisers or organisations such as “myDonate”. These third parties will only share your information with us when you have indicated that you wish to support TOFS and have given your consent.

Personal data we collect and how we use it?

  • Personal data is information that can be used to help identify an individual, such as a name, address, phone number or email address. We will only ever collect the information necessary for us to recognise you as a member of the TOFS Charity, answer your enquiries, or provide you with a service. The type and quantity of information we collect and how we use it depends on why you provided it. Occasionally we may ask for your consent to use photos of you and/or your family and such photos will be treated in the same way as any other information. We may also ask you to provide financial data related to donations, fundraising, and merchandise sales but you a not obliged to do so.
  • We ask those who are parents or guardians of children born with TOF/OA/VACERL and adults who were born with TOF/OA/VACERL to provide specific medical details of how they are affected and the medical procedures they may have undergone. This information is the foundation of a medical database which is an invaluable research resource. We may share this information in an anonymised format with bona fide researchers. It is entirely the choice of the individual whether or not they wish to provide this information. Occasionally a medical researcher may ask to make direct contact with an individual who may be able to provide information about a specific aspect of the TOF/OA/ VACTERL condition. In such cases we may contact you to enquire if you would be willing to speak to the researcher.
  • Our staff may also collect sensitive personal data about you/your child(ren) when you contact us via any means. They will use this information to answer your questions and give advice or guidance.

Children aged 13 and over.

If you are providing personal data on behalf of a child 13 and over, or giving permission for a child’s photograph to be published by TOFS, it is recommended that you should ensure that your child has no objection.

Fundraisers and Donors

If you contact our staff to donate, volunteer, register to fundraise, sign up for an event or contact us, we will usually collect the following information:

  • your name;
  • your contact details (address, email address, telephone number(s));
  • your connection (if any) with TOF/OA/VACTERL;
  • your bank or credit card details, only if any transaction is involved,
  • details of the event or fundraiser; and
  • if you are happy for us to share your online donation page e.g. myDonate on our social media.

How we keep your data safe and who has access

We will take all reasonable measures to ensure that there are appropriate procedures and controls in place to protect your personal details, and that our IT service providers and other relevant suppliers are compliant with data protection legislation. We restrict access to the information that we hold about you/your child(ren) to our staff and Trustees and contractors managing our data storage facilities. Suitably volunteers assisting with our activities may have limited access to some personal data.

When we run events (e.g. our national conference or our AGM), we may pass your/your child(ren)’s name(s) and/or age(s) to a third party such as a hotel or crèche provider. If you take part in an event for TOFS (e.g. London Marathon) we will provide the event organiser with your name and any other details they require in order to enter you for the event.

TOFS will never to sell personal data or use the data of any member for pecuniary advantage. We will only share your/your child(ren)’s details in exceptional circumstances and only then with your express permission, or where legally required.

Keeping your information up to date

In order for TOFS to continue to provide you with a full range of membership services It is your responsibility to advise us promptly of any changes in you contact details. However, you have a right to choose what information you provide to us and you don’t have to update your details if you don’t want to.

Your rights 

You have a right to ask us to:

  • stop processing your personal data. Providing it is not necessary for the purpose you provided it to us (e.g. processing your donation or registering you for an event), we will do so.
  • supply a copy of the personal information we hold about you. In these circumstances please contact TOFS at our registered address.
  • delete/remove all information we hold about you. In some circumstances we can refuse to carry out this request, e.g. if we require your data in order to fulfil a legal obligation. If this is the case, we will advise you as to why we cannot comply with your request.
  • to block/suppress the processing of your personal data. In these circumstances we are permitted to store your data but stop any further processing/use of it.
© Tracheo-Oesophageal Fistula Support
TOFS is a Registered Charity in England and Wales (327735) and a Private Company Limited By Guarantee without Share Capital, registered in England and Wales (2202260).
Registered address: TOFS, St. George’s Centre, 91 Victoria Road, Netherfield, Nottingham NG4 2NN.
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