Welcome to the TOFS website

TOFS (Tracheo-Oesophageal Fistula Support) is a charity dedicated to improving the lives of all who were born with the TOF condition.

For nearly forty years we have been helping families through the challenges of bringing up a child with OA/TOF, VACTERL and associated conditions.

We do this by providing one-to-one support, and a range of information (including a comprehensive medical book) and resources to families. TOFS is a recognised source of information for professionals with an interest in OA/TOF. Through our Facebook group we provide a platform where parents and carers of TOF children can discuss the problems they face and gain support from each other. We endorse a second Facebook group which is run by Adult TOF Faye Barnes, specifically for Adult TOFs and teenagers about to leave paediatric care. A key event in the TOFS calendar is our successful annual OA conference for families and adults, which is increasingly attended by health professionals with an interest in OA. We recognise that some people born with TOF continue to need help and support as adults, which we endeavour to provide. 

The TOFS charity also takes an active role in supporting research into the causes and implications of these conditions. We are a founder member of EAT, the international federation of OA/TOF support groups, through which we are closely connected with international collaborative work to improve outcomes for those born with OA/TOF.  

As a registered charity we receive no government funding and rely entirely on members' donations, voluntary donations and other sources of charitable income to fund our activities. Read more about how we are funded.

The TOFS office is in Nottingham, where our CEO and small staff team are based. Our office is usually staffed Mon, Wed and Thurs from 8.30 to 2.30pm. In line with government recommendations for COVID-19, the team are currently working from home, and have access to all systems and processes remotely.  They may be contacted via email: info@tofs.org.uk. 

TOFS is a registered charity, no. 327735 and a limited company, no. 2202260.  Elected trustees make up the Council of Management and are ultimately responsible, collectively, for the charity.  Trustees receive no remuneration. Trustees serve for three years and are eligible to stand for re-election at the end of their term. Any full Member of our charity is eligible to stand for election as a Trustee.

Member volunteers also play an important role in providing one-to-one support to parents and in supporting other activities, such as fundraising and events.

Membership of TOFS is open to:

  • parents, carers and relatives of children born with OA/TOF/VACTERL or any oesophageal condition;
  • adults born with these conditions; and
  • interested medical professionals.

Use the links below to learn more about how we are organised and how we can help

Council of Management
Office Staff

How we are Funded
Information and resources
Who We Help
Support for Parents
Support for Adult TOFs

© 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.
Website by Altido

Our team at TOFS is working tirelessly to bring you the latest advice regarding Coronavirus. The support and advice we provide are only possible thanks to kind donations from people like you. If you're able, please consider donating now.