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]
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