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News

Help to improve understanding of feeding issues experienced by those born with OA/TOF
Published: Tue, 10th November 2020, 01:41 PM What is SaFE and who is involved? SaFE is a PhD project being carried out by Alexandra Stewart, a speech and language therapist, alongside a team of researchers at Great Ormond Street Hospital and University College Londo ... [Read more]
Useful resources for TOFS members
Published: Mon, 2nd November 2020, 03:19 PM Much has changed over the last eight months and the need to signpost hidden disabilities is becoming increasingly important, especially when it comes to the 'TOF cough'. We've teamed up with the Hidden Disabilities Sunf ... [Read more]

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Member Feedback

To all at TOFS, just a really big THANK YOU for being there. All I wanted was just for someone to listen and understand and you were there for me.

Jo Wright, parent of a child born with OA/TOF

We wanted to thank you again for all the support you have given us over the phone and through your newsletter, website and online forum. We have found TOFS an invaluable resource and spread the word wherever we can about the great work you do.

Joanne and John Winspear, parents

The TOFS support group does exactly what it says on the tin! It supports. And that’s a very reassuring feeling - talking to people who have been there. You guys do a wonderful job.

Rachel Simpson, parent

During my working life as a paediatric surgeon I learned as much, if not more about TOF from parents and from TOFS meetings as I did from learned journals.

Leela Kapila, past Vice-President of the Royal College of Surgeons

When I read Chew, I’m encouraged by reading about the positive side of OA/TOF and the achievements of all the children and TOF adults. TOFS, the website, the Forum and Chew have all been a marvellous source of information and encouragement for us.

Rachel and Mark Hayes, parents

Our bumpy ride has been so much easier with TOFS; just listening to other people’s experiences and knowing someone is there.

Charlie and Lesley Cochrane, parents

Useful Links

Hospital Travel Cost

NHS scheme for help with travel costs for those who qualify

NHS 111

For when you need urgent medical advice and unable to contact your doctor

Adult TOF Facebook Group (endorsed by TOFS)

A (closed) Adult TOF Facebook Group, run by Adult TOF, Faye Baker, and endorsed by TOFS

Contact - for families with disabled children

UK charity which signposts parents to relevant support groups. CaF also provides resources on a range of issues (including benefits and rights) and offers the support of a Welfare Rights Officer. Directory for specific conditions, rare disorders and UK Family Support Groups.