News
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2021 TOFS Awareness Week: 15 – 21 March
Published: Mon, 1st March 2021, 09:40 AM The 2021 TOFS Awareness Week is nearly upon us and we hope to use the week to spread the word about OA/TOF! This year’s Awareness Week is set to coincide with International Swallowing Awareness Day on Wednesday 17 Marc ... [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]