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News

Opportunity to take part in a Department of Health Survey

Published: Fri, 18th October 2019, 10:10:00 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 government about the things that matter to the TOF/OA community, such as:

Lack of coordination of care between different hospital specialists
Lack of adequate provision for transition from child to adult services
Lack of availability and provision of wider support for rare disease e.g. social care provision, special educational support

The survey only takes about ten to twenty minutes - well worth it if it helps influence strategy for rare diseases in the future.

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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 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

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

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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.