Rare Disease UK Announces New Project
26 June 2017
Rare Disease UK want to ensure that everyone affected by a rare, genetic or undiagnosed condition, no matter their age, has a voice where it matters.
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 (Saturday 22nd July), SWAN UK (Monday 7th August) and their colleagues in the devolved nations.
The primary objective of this new project is to develop a picture of the lived experiences of children and young people affected by a rare, genetic or undiagnosed condition and their siblings, as told by them. The findings of the project will be published in a report, which will provide patient organisations, clinicians, social workers and others working in the rare disease community with greater insight into the specific issues affecting children and young people who are patients. The report will also help to inform the Rare Disease UK campaign and broader work of Genetic Alliance UK so they are better able to advocate for and address the needs of children and young people.
The engagement activities they have developed are fun, creative and suitable for participants with varying communication needs and learning ability.