• Meet our London Marathon 2019 Runners

    Published: Wed, 14th November 2018, 12:36 PM LEE BARNARD Coming soon.   See Lee's MyDonate page here: ... [Read more]
  • Patients and healthcare professionals wanted for CONCORD Focus Groups

    Published: Wed, 7th November 2018, 12:12 PM CONCORD (CoOrdiNated Care Of Rare Disease) is a research study which aims to investigate how care of people with rare diseases is coordinated in the UK and how patients, their families, and the health care professionals who c ... [Read more]
  • Three useful cards - available NOW!

    Published: Thu, 1st November 2018, 10:00 AM These useful little cards are just the thing for certain situations that many TOF/OA families and TOF Adults understand well! Request your copies from the TOFS office now, by emailing  Please include which ... [Read more]
  • TOFS - collaborating with the PROFS - in Berlin!

    Published: Wed, 31st October 2018, 09:00 AM The ERNICA Surgery and Follow-up Consensus Guidelines workshop - in consultation with TOFS and other European patient support groups - was held in Berlin last week.  The workshop was attended by a number of eminent pae ... [Read more]
  • TOFS engage with Medics at Conference 2018

    Published: Mon, 29th October 2018, 09:58 AM Excellent meeting with Medics at TOFS Conference 2018, Coventry The recent TOFS Conference at Coventry was well attended by various healthcare professionals.  Some of them took part in a lunchtime meeting of the TOFS&nb ... [Read more]
  • Photo request by the Oxford Patient Safety Collaborative

    Published: Wed, 24th October 2018, 01:02 PM Regular readers of Chew and those of you who attended our TOFS Conference 2018 in Coventry will know all about our mission to actively engage with medics.   Some of you may have seen a poster display about current r ... [Read more]
  • TOFS support a TOF's research!

    Published: Mon, 22nd October 2018, 09:00 AM We are pleased to say that TOFS Trustees have recently agreed in principle that the charity should give some financial support to Dr. Vuokko Wallace, who is researching psychological impacts of TOF/OA on families. Some while ago, ... [Read more]
  • Exciting developments for TOFS-endorsed research project

    Published: Wed, 17th October 2018, 08:00 AM ... [Read more]
  • Now available to download: School Individual Healthcare Plan and Nursery Statement templates

    Published: Sat, 13th October 2018, 09:00 AM Do you need help compiling a Healthcare Plan for your TOF/OA child? TOFS are very grateful to Paediatric Dietitian and TOF parent Julia Faulkner for compiling a School Individual Healthcare Plan Template and a Nursery Statement T ... [Read more]
  • Time is running out to apply to run in the 2019 Virgin Money London Marathon for TOFS!

    Published: Wed, 3rd October 2018, 11:22 AM Would you like to run the 2019 London Marathon for TOFS? Our application process closes in just a few days time so apply NOW! We give priority to TOFS members and their friends and relatives.   Entry fee is £50. Spons ... [Read more]
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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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