Children and Young People’s project

Rare Disease UK announces the next Children and Young People’s project sessions. We want to ensure that everyone affected by a rare, genetic or undiagnosed condition, no matter their age, has a voice where it matters.

The children and young people’s project aims to develop a picture of the experiences of children and young people affected by a rare, genetic or undiagnosed condition and their siblings, as told by them. The project uses a range of flexible and fun activities to engage with children aged 5-10 and their siblings. Our session in Birmingham (details below) will look to engage with young people aged 11-17.

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 and their siblings. The report will also help to inform the Rare Disease UK campaign and broader work of Genetic Alliance UK so we are better able to advocate for and address the needs of children and young people.

The engagement activities we have developed are fun, creative and suitable for participants with varying communication needs and learning abilities.

Find the details for the next engagement session below – children and their parents or guardians will be able to sign up to take part on the day.

Parents or guardians will need to complete a consent form for their child’s participation, and, where possible, the child will also give their consent to take part. The Rare Disease UK team will ensure they understand what they are taking part in and that the activities are fun and inclusive at all times:


WHEN: Saturday 21 Oct 2017

WHERE: Radisson Blu Hotel, Stansted Airport, Waltham Close, London CM24 1PP


WHEN: Thursday 19 Oct 2017

WHERE: Royal Children’s Hospital, Glasgow.


WHEN: Saturday 9 Dec 2017

WHERE: Birmingham Children’s Hospital.


WHEN: Saturday 20 Jan 2018, 10am-12pm

WHERE: Alan Shearer Centre.

Separate information leaflets for both parents/guardians and children will be available ahead of the events. In the meantime, if you would like more information, or to find out how you or your child can get involved in the project, please e-mail Sarah Gilbert: [email protected]

Remember to vote for your favourite...