Survey: transforming mental health support for children and young people with rare disorders

Posted August 14th 2019

Cerebra supports children with brain conditions and they are working to improve mental health information and services for children with rare genetic conditions known to be associated with neurodevelopmental problems.

Are you a parent of a child who has a rare genetic condition that affects their neurodevelopment? Or a voluntary support worker or health professional who supports and cares for this group of children? If yes, we would love to hear from you!

Cerebra’s five-minute survey will gather information about services available to children with genetic diagnoses which are linked to their neurodevelopmental conditions, such as Intellectual Disability, Autism, ADHD, behavioural problems, motor conditions and social communication problems.

Additionally, you can also express your interest to take part in one of their focus groups in which you can tell Cerebra about your experiences of, and thoughts about current mental health services and information.

If you’re interested in taking part, complete their survey online.

Focus groups

The focus groups will be held in September and October in Cardiff, Birmingham and Manchester.

Read more

• Collaborating to advance support available to families
• Rare disease day