Rare Disease UK will be coordinating a new project that aims to find out more about children and young people’s experiences of living with a rare, genetic or undiagnosed condition.
We 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, SWAN UK and our colleagues in the devolved nations.
Rare Disease UK has published two reports since 2010 that aim to describe the lived experiences of adult patients and parents of those affected by a rare, genetic or undiagnosed condition. Children and young people affected by these conditions face barriers in accessing a diagnosis, appropriate care and treatment for their condition and coordinated care that takes their physical, mental and social care needs into account. These needs have been identified in reports by Rare Disease UK and Genetic Alliance UK. The Hidden Costs of Rare Diseases: A Feasibility Study highlights that “receiving coordinated care is important for rare disease patients, yet remains a challenge”. The same needs are also described in the UK Strategy for Rare Diseases.
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 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 ability.
Our first engagement sessions will take place at the following events, and patients 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 assent to take part. The Rare Disease UK team will ensure patients understand what they are taking part in and that the activities are fun and inclusive at all times:
WHEN: Saturday 22 July 2017, 10am-3pm
WHERE: Uffculme Centre, Queensbridge Road, Moseley, Birmingham, B13 8QY.
Click here for more information about the event.
WHEN: Monday 7 August 2017
WHERE: Thames Valley Adventure Playground, Bath Road, Taplow, Maidenhead, Berkshire. SL6 0PR
For more information, please e-mail Miriam Ingram on firstname.lastname@example.org.
Separate information leaflets for both parents/guardians and children will be available ahead of the events. In the mean time, if you would like more information, or to find out how you or your child can get involved in the project, please e-mail Rosa Spencer-Tansley on email@example.com.