News
-
Celebrate Rare Disease Day with TOFS' Family Information and Support session in Sheffield!
Published: Wed, 22nd January 2020, 01:00 PM Saturday 29 February, 11am - 1pm in Wadsley Church Hall, Sheffield, S6 4BB. Bookings now open! This year, the TOFS 2020 Awareness week will run from 24 February to 1 March. To celebrate Rare Disease Day on 29 February ... [Read more] -
Save the date for TOFS 2020 Conference!
Published: Mon, 23rd December 2019, 08:34 AM It will be held on Saturday, 3 October, 2020. The venue is the High Wycombe campus of Bucks New University, HP11 2JZ, just off the M40. It's conveniently located for London, with direct buses and trains, and will be pretty ... [Read more] -
TOFS is recruiting! Membership communications and support worker vacancy
Published: Thu, 19th December 2019, 04:00 PM Thank you for your applications. This vacancy has now closed. We will be in touch with all applicants in due course. Join our small hardworking team as we enter a new stage of growth and development. We are looking fo ... [Read more] -
Anna joins the team at TOFS!
Published: Fri, 6th December 2019, 11:39 AM We are delighted to welcome Anna Clark on to the TOFS team as Volunteer and Events Co-ordinator. Working closely with TOFS local contacts (TLCs), Anna will be responsible for increasing volunteer engagement to help TOFS fulfil it ... [Read more] -
UK law firm, Bevan Brittan, gifts £5000 to TOFS!
Published: Thu, 5th December 2019, 04:54 PM TOFS is delighted to be one of the charities selected to receive this incredibly generous donation from law firm, Bevan Brittan, in lieu of Christmas cards. The donation is part of a £20,000 sum that Bevan Brittan is ... [Read more] -
Meet our London Marathon 2020 Runners
Published: Thu, 5th December 2019, 10:13 AM We are delighted to announce that the following people will be running the 2020 London Marathon in April for TOFS. Ann Weeks Sarah Barnes Darren Webborn Richard Lawrence Luke Jones ... [Read more] -
The TOF Book - IS NOW BACK ON SALE!
Published: Mon, 25th November 2019, 05:10 PM Great news - Amazon have now resolved the error on their system. Our fantastic TOF book is available again on the Amazon website ... [Read more] -
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]