Every year around 1 in 770 babies develop hydrocephalus. It is a serious condition that affects the brain and there is no cure. With the right support children can go on to live full and happy lives, but early diagnosis makes a big difference to their outcomes.

Harry’s Hydrocephalus Awareness Trust (Harry’s HAT) was set up by families who know first-hand what it means to care for a child with hydrocephalus. We are proud to be a user-led charity, shaped by the experiences of parents and carers. This means the voices of families guide everything we do.

Our aim is to improve life for children affected by hydrocephalus and for the families who love and care for them. We understand how overwhelming and isolating it can feel when a child is diagnosed, and we want families to know they are never facing this journey alone.

We focus on four main areas of work:

• Raising awareness so hydrocephalus is better understood and more accepted in schools, communities and health settings

• Supporting health professionals through training so children receive the very best care

• Connecting families so they can share experiences, build friendships and feel less isolated

• Driving change through our Get-a-Head campaign, which highlights the importance of head circumference checks in babies and calls for stronger national standards to improve early diagnosis

Since we launched in 2018 we have heard from many families who believe their child’s hydrocephalus could have been detected earlier. The Get-a-Head campaign is our response, and our goal is to make sure no child slips through the net.

Find out more at www.harrys-hat.org