News

  • Book now for TOFS' second online support session of 2021!

    Published: Wed, 21st April 2021, 01:45 PM TOFS members are invited to join our upcoming online support session, ‘Supporting Siblings, Dads and Partners too’, on Tuesday 11 May at 8pm. Don’t miss this exciting opportunity to connect with others, share ... [Read more]
  • Exciting Opportunity to join TOFS as our Digital Communications Lead!

    Published: Tue, 20th April 2021, 09:38 AM TOFS is recruiting for the new and exciting role of Digital Communications Lead. The successful candidate will be responsible for managing, developing and optimising digital communications with our stakeholders and will be instrum ... [Read more]
  • Take part in the Captain Tom 100 and help to raise funds for TOFS!

    Published: Wed, 7th April 2021, 11:02 AM Last April Captain Tom Moore set out to walk 100 laps of his garden and raised an incredible £38.9 million for the NHS Covid-19 appeal. This year, to mark what would have been his 101st birthday, the Captain Tom 100 challeng ... [Read more]
  • Applications for Guts UK/BSPGHAN research development grant now open!

    Published: Wed, 7th April 2021, 09:14 AM Guts UK are delighted to announce that Guts UK/BSPGHAN grants are now open.   Guts UK and the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN) are passionate about supporting research i ... [Read more]
  • APPLY NOW for your place at the 2021 London Marathon and Virtual London Marathon!

    Published: Thu, 1st April 2021, 01:06 PM Our application process for the 2021 London Marathon is now open!  The Marathon will take place on Saturday 3 October and this year you have the opportunity to apply to run the London Marathon route or the Virtual L ... [Read more]
  • Findings so far from CARE study into genetic factors contributing to OA/TOF

    Published: Mon, 29th March 2021, 10:48 AM Researchers from the CARE for Kids EA/TEF* Study being conducted by Columbia University have had their genetic sequencing results (from 45 families who enrolled in the pilot study) published in the European Journal for Human ... [Read more]
  • Help needed to improve training and support for parents new to gastrostomy care

    Published: Thu, 25th March 2021, 01:40 PM In 2020 TOFS helped to recruit families of children who are gastrostomy fed to work with Bethan Page (Research Fellow, Experimental Psychology, University of Oxford) in order to try and improve training and support ... [Read more]
  • TOFS AGM 2021

    Published: Thu, 25th March 2021, 12:16 PM Once again, because of Covid restrictions, this year’s Annual General Meeting for TOFS took place over Zoom at the end of March.  Hon Chairman and Trustee Duncan Jackson welcomed everyone and introduced the TOFS trustee ... [Read more]
  • Wow - what an Awareness Week!

    Published: Thu, 25th March 2021, 10:41 AM 2021 TOFS Awareness Week took place this year from 15 to 21 March and thank you to everyone who helped to spread the word about OA/TOF!  We timed this year’s Awareness Week& ... [Read more]
  • 2021 TOFS Awareness Week: 15 – 21 March

    Published: Mon, 1st March 2021, 09:40 AM A huge Thank you for all of your support in making the 2021 Awareness week such a huge success - you've been amazing. You can expect to see a full round up very soon! This year, more than ever, we feel that it is important to inc ... [Read more]
  • Adult TOF Vuokko Wallace published by the Journal of Pediatric Nursing

    Published: Sun, 28th February 2021, 12:10 PM We’re pleased to announce that Clinical Psychologist, University of Bath (and Adult TOF), Dr Vuokko Wallace’s Manuscript titled: 'Anxiety and depression in parents of children born with esophageal atresia: an internati ... [Read more]
  • Join our upcoming online support session, ‘Sharing tips and strategies for positive Mental Health’, on Tuesday 23 February at 8pm

    Published: Thu, 4th February 2021, 11:42 AM Don’t miss this exciting opportunity to connect with others, share experiences and receive support. We’re often told that meeting other parents is one of the most cherished and valuable benefits of attending a TOFS eve ... [Read more]
  • Help us make a video for TOFS Awareness Week 2021!

    Published: Tue, 2nd February 2021, 02:00 PM     As part of the 2021 TOFS Awareness week we’d love to produce a new video featuring some children/teens/adults born with OA/TOF.  Here’s one we hope to include, sent to us by Max Merrett, we th ... [Read more]
  • Adult TOF launches research into the role of Facebook groups in supporting the TOFS community.

    Published: Mon, 1st February 2021, 10:05 AM Adult TOF, Dr Jo Meredith, who studies online communication and behaviour, along with Dr Darren Chadwick, who has researched disability and online social support, as well as publishing research on dysphagia (both from the Universi ... [Read more]
  • Your Charity Lottery - New lottery to support TOFS!

    Published: Mon, 18th January 2021, 11:10 AM Click here to play and be in with a chance to win! TOFS is delighted to have teamed up with Your Charity Lottery to give our members a chance to win one of 81 weekly prizes, whilst raising much needed funds for the charity! Wo ... [Read more]
  • TOFS Trustee Graham Slater appointed as PPV Partner to the NHS England CRG - Specialised Surgery for Children!

    Published: Thu, 14th January 2021, 01:43 PM We are pleased to announce that TOFS Trustee and Honorary Secretary Graham Slater has been appointed to the role of Patient and Public Voice (PPV) Partner on the Specialised Surgery for Children CRG Clinical Reference Group (CRG). ... [Read more]
  • New UK Rare Disease Framework Published!

    Published: Thu, 14th January 2021, 11:40 AM The Department of Health and Social Care has published the UK Rare Diseases Framework, which replaces the  previous UK Strategy for Rare Diseases published in 2013.  The UK Rare Diseases Framework outlines 4 high-level ... [Read more]
  • Coronavirus

    Published: Wed, 13th January 2021, 10:40 AM As we enter the third phase of rises in Covid-19 cases in the UK, we will continue to update this page regularly.  Advice is changing frequently so please check back often.  With the identification of a new, more rapidly ... [Read more]
  • Call for footage for Rare Disease Day 2021 Video!

    Published: Tue, 12th January 2021, 09:14 AM Thank you for submitting your videos - we look forward to seeing if any of our TOF community appear in the final cut!   As part of Rare Disease Day 2021, Genetic Alliance UK are producing a video that aims to capture w ... [Read more]
  • It’s a New Year, and we are pleased to announce we have a new recruit to the TOFS team!

    Published: Thu, 7th January 2021, 12:09 PM Interviews for the Volunteer and Events Co-ordinator role were held at the end of last year by telephone and Zoom, and member of TOFS, Sophie Parkins, was delighted to accept the position. Sophie will be responsible for helping&n ... [Read more]
  • The impact of Brexit on people travelling to Europe with pre-existing health conditions

    Published: Mon, 4th January 2021, 01:30 PM Further to our previous guidance posted in November 2020, we are pleased to advise that the recently announced ‘Brexit deal’ accommodates ongoing reciprocal arrangements for emergency healthcare for travellers with in ... [Read more]
© 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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