Anna joins the team at TOFS!

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 its objectives in extending support to all...

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UK law firm, Bevan Brittan, gifts £5000 to TOFS!

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 giving nationally to charities this...

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Meet our London Marathon 2020 Runners

Thu, 5th December 2019, 10:13 AM

Sarah Barnes This is Jacob (Bobby as he’s affectionately known). My nephew and very own superhero. Some of you will have met him but most of you will have heard me talk about him and the ordeal that he has gone through in the first 4...

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The TOF Book - IS NOW BACK ON SALE!

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

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Take part in this survey - highlight failings in how care is coordinated for TOF/OA patients

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. <span style="font-size: 12.0pt; font-family:...

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Opportunity to take part in a Department of Health Survey

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...

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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 TOF/OA

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 TOF/OA 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.