News

  • Take part in this survey - highlight failings in how care is coordinated for TOF/OA patients

    Published: Thu, 24th October 2019, 10:40 AM Here's another survey we'd love you to complete to highlight failings in how care is coordinated for TOF/OA patients, especially at time of transition. The COordiNated Care Of Rare Diseases (CONCORD) study is based at UCL, a ... [Read more]
  • Opportunity to take part in a Department of Health Survey

    Published: Fri, 18th October 2019, 10:10 AM The Department of Health has launched a Survey which aims to identify the major challenges faced by rare disease patients. Please do follow the link to complete the survey bit.ly/2oOOiPe It's your opportunity to tell the gov ... [Read more]
  • Update on research into training and support for children with feeding tubes

    Published: Thu, 17th October 2019, 10:30 AM University of Oxford PhD student Bethan Page, recently submitted a poster updating us on her research exploring how to better prepare and support parents to provide complex medical care for children, both practically and emotional ... [Read more]
  • Don't forget your flu vaccine, recommended for all TOFs - regardless of age!

    Published: Fri, 11th October 2019, 11:10 AM That's just one of the key messages from the healthcare professionals at the TOFS 2019 Conference which took place on Saturday 5 October.   Public Health England routinely measure the vaccine effectiveness (VE) of the f ... [Read more]
  • Apply NOW to run for TOFS in the 2020 London Marathon!

    Published: Mon, 7th October 2019, 01:33 PM The application process to run the 2020 London Marathon for TOFS is now open and we'd love to hear from you!  Just complete the application form and return to TOFS by 30th October 2019.  Priority is given to TOFS membe ... [Read more]
  • TOFS appoints CEO

    Published: Mon, 5th August 2019, 02:52 PM Following an extensive strategy review in 2018, TOFS have appointed office manager Diane Stephens to the role of Chief Executive.  Diane will work alongside the trustees to drive TOFS forward into a period of develo ... [Read more]
  • Face-to-face in Essex (via TOFS Facebook group)!

    Published: Mon, 8th July 2019, 11:58 AM Six TOF families had a lovely time recently at an ‘unofficial’ get-together organised by Anna Hallett, mum to Archie, born with TOF.   Anna says: “We had a lovely meet-up on Sunday 30th June at Woody&r ... [Read more]
  • Introducing our amazing Great North Run runners

    Published: Thu, 30th May 2019, 11:11 AM We are delighted to announce that the following people will be running the Great North Run in September for TOFS.   Natasha Birkett, TOF relative; James Durrant, TOF grandparent; (story and photo to follow) Bre ... [Read more]
  • Book now for the 2019 TOFS Conference!

    Published: Wed, 29th May 2019, 04:43 PM Bookings are now open for the 2019 TOFS Conference.  Only £22 per person (incl refreshments and lunch). Full information and booking available here NOW!  When: Saturday 5th October 2019 Where: The EngineRooms a ... [Read more]
  • Adult TOFs - Take part in this important survey into the psychological impact of TOF/OA in adulthood

    Published: Thu, 16th May 2019, 01:53 PM Are you an Adult TOF - or the parent of an Adult TOF? Postgraduate psychology students, Lia Clarke and Cailin Rabone, from the University of Bath would like to invite you to take part in an online survey exploring the wellbeing o ... [Read more]
  • Wow! All eight runners successfully complete the Marathon for Team TOFS!

    Published: Mon, 29th April 2019, 09:30 AM A HUGE thank you! We are very proud to report that all eight of our runners safely completed the London Marathon yesterday.  Some photos here and details of their fundraising to follow.  In the meantime, a huge thank yo ... [Read more]
  • AGM 2019 AND CHILDREN'S PARTY, WARWICK, 23 MARCH 2019

    Published: Tue, 9th April 2019, 11:34 AM Our Chairman, Duncan Jackson, welcomed everyone and thanked everyone for coming. After summarising what TOFS has been up to over the last year, our Treasurer John Pearce summarised the key points of the Annual Accounts from 2 ... [Read more]
  • Research developments on the psychological impact of OA/TOF across the lifespan

    Published: Tue, 26th March 2019, 08:55 AM My name is Dr Vuokko Wallace, I’m an Adult OA/TOF and a clinical psychologist working with children and families.  I’m conducting research on the psychological impact of OA/TOF on families. Many thanks to those of ... [Read more]
  • End of Year Results of Specialist Healthcare Survey for Children

    Published: Wed, 6th March 2019, 10:20 AM Results of 'Specialist Healthcare Survey for Children' Thank you kindly to everyone who took the time to respond to our request back in April to complete a WellChild and University of Oxford survey about providing 'specialis ... [Read more]
  • Prestigious invitation to GOSH Biomedical Research Centre Showcase for TOFS Trustee Graham Slater

    Published: Mon, 4th March 2019, 10:21 AM We are delighted that our Trustee Graham Slater has received an invitation on behalf of TOFS to attend the NIHR Great Ormond Street Hospital Biomedical Research Centre Showcase event. The NIHR is the National Institute f ... [Read more]
  • Research project investigating feeding and swallowing with TOF/OA

    Published: Sat, 2nd March 2019, 10:10 AM Research project investigating feeding and swallowing in TOF/OA Alex Stewart, a Speech and Language Therapist at Great Ormond Street Hospital, has secured funding from the National Institute of Health Research to conduct a 5 ... [Read more]
  • Bigthinkers raise BIG amount for TOFS!

    Published: Fri, 1st March 2019, 03:30 PM Bigthinkers marketing studio in Notts threw their doors open last week to fundraise for TOFS. Delicious coffee and cake was on offer - in aid of TOFS - because one of their employees is the dad to a TOF.  Graphic Design ... [Read more]
  • TOFS and Research

    Published: Fri, 1st March 2019, 09:07 AM 'Behind the scenes – cooperating with researchers' by TOFS Trustee Graham Slater, reprinted from CHEW Summer 2018   It may surprise you but OA is a relatively high priority for medical researchers across the world. Qu ... [Read more]
  • Rare Disease Day, 28 February 2019

    Published: Thu, 28th February 2019, 09:00 AM Rare Disease Day 28 February 2019   We are delighted to support Rare Disease Day (28 February 2019). Thank you so much to everyone who has shared our Rare Disease Day images on social media. There is still time to ... [Read more]
  • LAST CHANCE to take part in important survey re TOF/OA and a 'lost twin'

    Published: Wed, 27th February 2019, 12:16 PM OUR SURVEY CLOSED THURSDAY 28 FEBRUARY TOFS invited parents who have had children born with TOF/OA to take part in this very short preliminary survey to better understand the possible link between these conditions and a ‘lo ... [Read more]
  • Congratulations to Harriet, an Ouch! Award Hero

    Published: Mon, 4th February 2019, 11:50 AM Congratulations to Harriet, age 10! Dr Chris and Dr Xand, from the hit children's BBC TV show Operation Ouch!, explore the ins and outs of the human body using experiments. Our member, Harriet, who didn't eat until she was n ... [Read more]
  • Successful meeting of TOF families

    Published: Fri, 4th January 2019, 09:18 AM On Saturday 1st December, five TOF families from the south east of England met up at a pub near Bluewater, Kent. The gathering was organised using the TOFS' Facebook group and although it took a little planning, everything came to ... [Read more]
  • TOFS' 2019 AGM and Children's Party on Saturday 23 March

    Published: Tue, 1st January 2019, 10:40 AM Bookings are now closed. Thank you to everybody who has booked and we look forward to seeing you there!   INVITATION TO OUR 2019 AGM AND CHILDREN'S PARTY We are delighted to invite all our Members and Associates to our for ... [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.
Website by Altido