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Privacy statement

This Privacy Statement should be read in conjunction with our Terms and conditions.

TOFS is committed to discharging it legal obligation to ensure the complete privacy of all personal data relating to members of the Charity, and others with whom the Charity interacts including advisors and supporters. This document tells you how and why we collect your data, how we secure, store, and use it, and your legal rights with respect to that data.

Definitions and interpretation

The following definitions are used: In this Privacy Statement.

Tracheo-Oesophageal Fistula Support (TOFS) (“we or us”) – a charity registered with the charity commission number327735 and T.O.F.S. a company incorporated in England and Wales with registered number 02202260 whose registered office is at St Georges Centre, 91 Victoria Road, Netherfield, Nottingham, NG4 2NN

Data – collectively all information that you submit to TOFS, via the Website, or by any other means. This definition incorporates, where applicable, the definitions provided in the Data Protection Act 1998;

Cookies – a small text file placed on your computer by this Website when you visit certain parts of the Website and/or when you use certain features of the Website. Details of the cookies used by this Website are set out in the clause below (Cookies);

GDPR – the General Data Protection Regulation 2018 (;

UK and EU Cookie Law – the Privacy and Electronic Communications (EC Directive) Regulations 2003 as amended by the Privacy and Electronic Communications (EC Directive) (Amendment) Regulations 2011 (;

User or you – any third party that accesses the Website or shares personal data with us and is not either (i) employed by TOFS and acting in the course of their employment or (ii) engaged as a consultant or otherwise providing services to TOFS and accessing the Website in connection with the provision of such services.

Website(s) – the website that you are currently using ( and any sub-domains of these sites unless expressly excluded by their own terms and conditions.

In this Privacy Statement, unless the context requires a different interpretation:

  • the singular includes the plural and vice versa;
  • references to sub-clauses, clauses, schedules or appendices are to sub-clauses, clauses, schedules or appendices of this Privacy Statement;
  • a reference to a person includes firms, companies, government entities, trusts and partnerships;
  • “including” is understood to mean “including without limitation”;
  • reference to any statutory provision includes any modification or amendment of it;
  • the headings and sub-headings do not form part of this Privacy Statement.

Scope of this Privacy Statement

This Privacy Statement applies to all legal obligations which TOFS must fulfil to ensure full compliance with GDPR. This includes the actions of TOFS and Users with respect to this Website. It does not extend to any websites that can be accessed from this Website including, but not limited to, any links we may provide to social media, or other websites. It also includes any data you may share with us by any other means.

The data we collect

The only data which TOFS requires you to provide is that which is consistent with your membership of the Charity, namely your name, and contact information such as email addresses and telephone numbers.

If you are a parent or guardian of a TOF child or you are a TOF adult you are invited to provide TOFS with personal medical data but there is no obligation for you to do so. You have the right to request a copy of all the data held by TOFS You also have the right to ask for some or all the data we hold to be amended or deleted.

If you place an order via our online shop, we will collect your name and contact information in order to supply the item(s) you have ordered. 

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

Retention of data

Data which is directly relevant to your membership of TOFS will be retained for as long as you remain a member of the Charity. Other data will be periodically deleted. If your membership ceases your personal data will be archived unless we receive legitimate instructions for it to be deleted.

Our Use of Data

  • For purposes of the Data Protection Act 1998, TOFS is the “data controller”.
  • For purposes of managing your membership to TOFS.
  • For purposes of fulfilling an order you have placed via our online shop.

  • Your financial and/or personal data may be passed to third-party organisations in order to process your transactions with TOFS, such as credit card companies, banks and the companies that handle payments or shipping on our behalf. We will also share your data with HMRC if you give us permission to claim Gift Aid on donations you make.

  • We will retain any enquiry Data you submit only for so long as is necessary to process your enquiry.

  • Unless we are obliged or permitted by law to do so, and subject to any third-party disclosures specifically set out in this statement (see Third Party Websites and Services), your Data will not be disclosed to third parties.
  • All personal Data is stored securely in accordance with the principles of the Data Protection Act 1998. For more details on security see the clause below (Security).

Third party websites and service

We may, from time to time, employ the services of other parties for dealing with certain processes necessary for the operation of the Website and member data base. The providers of such services have access to certain personal Data provided by Users of this Website, and members of the TOFS charity.

Any Data used by such parties is used only to the extent required by them to perform the services that we request. Any use for other purposes is strictly prohibited. Furthermore, any Data that is processed by third parties will be processed within the terms of this Privacy Statement  and in accordance with the Data Protection Act 1998 and the General Data Protection Regulation 2018.

If you require a full list of suppliers that may have access to your personal data then please contact the GDPR data controller at T.O.F.S. by email at

Links to other websites

This Website has links to other websites. We have no control over such websites and are not responsible for the content of these websites. This Privacy Statement does not extend to your use of such websites. You are advised to read the Privacy Statement or Policy of other websites prior to using them.

Data security

Data security is of the highest importance to TOFS and to protect your Data we have put in place suitable physical, electronic and managerial procedures to safeguard and secure Data. Most, but not all the data you share with us is collected via this Website as part of the membership application process.

If password access is required for certain parts of the Website, you are responsible for keeping this password confidential. We endeavour to do our best to protect your personal Data, however, transmission of information over the internet is not entirely secure and is done at your own risk. We cannot guarantee the security of your Data transmitted through the Website. We ensure that any internal systems are password protected and that all reasonable steps have been taken to ensure the physical protection of personal data.

Social media

TOFS manages a Facebook group, but has no control over anything which is posted by anybody other than TOFS Trustees or employees. We will never post any personal data on the group other than that which you may have requested us to share, such as fund-raising events in which you may be involved. All matters relating to the privacy of information posted on the group site are governed entirely by the Facebook Privacy Policy.

TOFS also has accounts on and links to other social media sites. In all cases matters relating to the privacy of information are the responsibility of the site provider.


We use Google Analytics to help us improve our website, and the way you use it. This means that our website will remember you. It does so by placing cookies (small text files) on your device to keep track of usage data and provide information about how the site is being used such as the type of device being used to access our website, the number of times a person visits the website, the pages they access, and the time they remain on the site. However, it is important to understand the identity of the individuals is never made available to us. The information which TOFS receives is completely anonymous.

More about Cookies


You may not transfer any of your rights under this Privacy Statement to any other person. We may transfer our rights under this Privacy Statement where we reasonably believe your rights will not be affected.

If any court or competent authority finds that any provision of this Privacy Statement (or part of any provision) is invalid, illegal or unenforceable, that provision or part-provision will, to the extent required, be deemed to be deleted, and the validity and enforceability of the other provisions of this Privacy Statement will not be affected, Unless otherwise agreed, no delay, act or omission by a party in exercising any right or remedy will be deemed a waiver of that, or any other, right or remedy. 

This Agreement will be governed by and interpreted according to the law of England and Wales. All disputes arising under the Agreement will be subject to the exclusive jurisdiction of the English and Welsh courts.

You can at any time request that any, or all, personal data relating to yourself is deleted from our records.

Changes to this Privacy Statement 

T.O.F.S. reserves the right to change this Privacy Statement as we may deem necessary from time to time, or as may be required by law. Any changes will be immediately posted on the Website and you are deemed to have accepted the terms of the Privacy Statement on your first use of the Website following the alterations.

For more information you may contact the GDPR data controller at T.O.F.S. by email at