Dandy-Walker syndrome

Dandy-Walker malformation, DWS, Dandy-Walker variant, Dandy-Walker complex

What is Dandy-Walker syndrome?

Dandy-Walker syndrome is a rare congenital brain condition which affects brain development from birth. Often, a child born with Dandy-Walker syndrome will also have other conditions that impact their quality of life.

What causes Dandy-Walker syndrome?

Dandy-Walker syndrome is caused by a genetic mutation that leaves part of the brain missing.

What are the symptoms of Dandy-Walker syndrome?

The most common visible symptom is an oval-shaped crown of the head and flatness to the lower back of the head at birth.

Similar to autism, Dandy-Walker syndrome has its own spectrum. Associated conditions and learning differences include:

  • Sensory issues
  • Dyscalculia
  • Epilepsy
  • Congenital heart conditions
  • Autism
  • Craniosynostosis
  • Hydrocephalus
  • Low muscle tone
  • ‘Mirroring’ (motor control, both hands replicate each other’s movements)
  • Visual impairments

There is no known cure for Dandy-Walker syndrome. It is monitored through regular appointments with a neurologist, and if necessary, shunt surgery for severe hydrocephalus.

Are you affected by Dandy-Walker syndrome

If you’re affected by Dandy-Walker syndrome, The Brain Charity can support you.

We are the only charity in the UK to be here for every one of the more than 600 different neurological conditions in existence. Individually, many are rare, but combined, they affect 1 in 6 people.

We provide practical help on all aspects of living with Dandy-Walker syndrome, emotional support such as counselling, phone befriending and group therapy and social activities to people with Dandy-Walker syndrome and their family, friends and carers from all over the UK from our centre in Liverpool.

Looking to talk to someone?

Woman smiling, making eye contact and holding the hand of another woman to comfort her

Phone us

Contact The Brain Charity now

Our friendly Information & Advice Officers are here to help. We endeavour to respond to all enquiries within 10 working days.

0151 298 2999

Looking to talk to someone?

  • Please tell us which neurological condition you are affected by and what you need support with.

Caring for someone with Dandy-Walker syndrome

We support carers, friends and family too

Are you a carer for or relative of someone with Dandy-Walker syndrome? It’s just as important for you to look after your own physical and mental wellbeing too.

The Brain Charity provides free support for carers, friends and family of people with any form of neurological condition, including Dandy-Walker syndrome, from anywhere in the UK.

We also run an additional carers advocacy service for all carers in Liverpool, regardless of which type of condition the person they care for has.

You don’t need to be a formal or registered carer

We can help you even if you don’t view yourself as a formal carer or claim Carer’s Allowance. Find out some of the ways we support carers below.

Other resources

The Brain Charity's library

The Brain Charity’s library library contains resources for further information on rare neurological conditions

Support groups

Support groups at The Brain Charity

At present, there are no known support groups in the UK for Dandy-Walker.

If you are interested in setting up a Dandy-Walker support group, please email activities@thebraincharity.org.uk to let us know.

Alternatively, you can check out our list of support groups here.

Other charities


Website: www.headway.org.uk

Free and confidential helpline: 0808 800 2244

Email: enquiries@headway.org.uk

Dandy-Walker Alliance (USA)

The Walton Centre

Headlines Craniofacial Support

Website: www.headlines.org.uk

Free and confidential helpline: 07541 106 816

Email: info@headlines.org.uk