News
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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] -
The impact of Brexit on people travelling to Europe with pre-existing health conditions
Published: Mon, 4th January 2021, 01:30 PM Further to our previous guidance posted in November 2020, we are pleased to advise that the recently announced ‘Brexit deal’ accommodates ongoing reciprocal arrangements for emergency healthcare for travellers with in ... [Read more] -
Help us make a video for TOFS Awareness Week 2021!
Published: Tue, 22nd December 2020, 03:24 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 think it’s g ... [Read more] -
Season's greetings from TOFS!
Published: Tue, 22nd December 2020, 10:13 AM What a year 2020 has been. Some of you reading this will have connected with TOFS for the very first time this year; whether by seeking information and support with your new baby, attending our online Q&A sessions, reading the ... [Read more] -
OA/TOF highlighted in the first of ERNICA's animations that aims to help patients and families affected by Inherited and Congenital Anomalies
Published: Mon, 21st December 2020, 01:12 PM TOFS are delighted to see this initiative by The European Reference Networks for rare diseases - Inherited and Congenital Anomalies (ERNICA) in developing a series of animation videos which aim to provide information to patients, ... [Read more]