Rare Disease UK are coordinating a new project to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition.
“This project will use a range of flexible and fun activities to engage with patients aged 5-17 and their siblings. These activities will take place at events coordinated by Birmingham Children’s Hospital, SWAN UK and our colleagues in the devolved nations.” Rare Disease UK
The results of this project will be published in a report which will give an insight into children and young people’s experiences, the challenges faced and ways we can work together to ensure their voice is heard and their needs are addressed.
Their first fun event ‘Marvellous Superstar Summer Party’ will take place on the 22nd July 2017 at the Uffculme Centre in Birmingham. If you would like to attend you need to book a place by the 14th July 2017.
ASUK believe children and young people should always be heard – their voice is the most important, so we look forward to hearing more about this exciting project.
You can find out more about this project and the fun events via the Rare Disease UK website: