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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