Understanding Rare
Chromosome and Gene Disorders
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Improving mental health info & services for children with rare genetic conditions – Can you help?

Cerebra and Cardiff University are working on a project aimed at improving mental health information and services for children with rare genetic conditions. 

Cerebra are a national charity who work to support children with brain conditions across the UK, and they have collaborated with researchers at Cardiff University to improve mental health information and services available to children with genetic conditions known to be associated with neurodevelopmental problems, such as Intellectual Disability, ADHD and Autism. But…. they need your help!

 They would like to speak to parents who have a child diagnosed with a genetic condition to gather a better understanding of the support that is currently there for children, the barriers families have experienced trying to access psychiatric services and how parents believe services and information can be improved. Better understanding of these issues will help them to work with parents, health professionals and charities to make real changes to existing services.

How can you get involved?

 They’ll be running Focus Groups in Birmingham and Manchester very soon and would love for you to be there. Any parent is welcome to join them, no matter how old their child is, and regardless of whether they have accessed mental health services or not. They will also reimburse all travel expenses so that no one is out of pocket!

 If you would like to take part in one of the Groups, or would like to hear more, please contact Lowri O’Donovan, Research Assistant working on the project by email to odonovanl@cardiff.ac.uk

Click here to read a participant information sheet about the project.