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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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.