News
Opportunity to take part in a Department of Health Survey
Published: Fri, 18th October 2019, 10:10:00 AMThe 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.