Family picture. Mother and Father holding their children, everyone is smiling happily. One child has down syndrome and this family are part of the DSUK community.

Down Syndrome UK

With you for the journey

Down Syndrome UK is a parent-led organisation providing honest support and expert resources to families and professionals, empowering every child with Down syndrome to thrive.

Help us launch a Secondary Education Programme!

Currently, there is no formal requirement, or indeed national opportunity, for secondary school staff to access training to support students with specific profiles of learning such as Down syndrome. Educators and parents of children with Down syndrome, all report the need for Down syndrome specific training but access to this training, information and support is varied with the majority of local authorities across the UK unable to offer this provision to secondary schools.

We’re raising funds to create the UK’s first comprehensive online Secondary Education Programme – filling the critical gap that leaves too many families without adequate support during this crucial transition.

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Freya's story

Getting a diagnosis of Down syndrome for our baby whilst pregnant was a shock and we were really unsure of what this meant for our family

Having DSUK put us in touch with parents of older children with Down syndrome really helped us come to terms with our baby’s diagnosis.

Since birth we have been supported by DSUK with online physiotherapy, feeding, early development courses, Makaton, information for nursery and now currently toilet training and preparing for school.

Our confidence in advocating for our daughter has come from the excellent information and support we continue to receive from DSUK.

Starting Primary School

As our children start primary school years, we provide support, training and resources to both parents and professionals.

Through collaboration, advocacy, and sharing best practices, we strive to build a world where diversity is celebrated, barriers are dismantled, and every child’s potential is realised.

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Join us for one of our upcoming events

Read our blog

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Raise awareness wherever you go!

Pop onto our shop and browse our Down Syndrome UK merch! We now have various t-shirts, bags, window stickers, bags and more.

We’ve also put together Nursery and Primary School Information Packs to empower parents and the professionals working with our children.

Maternity Resources

It is important when discussing antenatal screening tests and results, that language used is respectful and accurate.  Language is powerful and the first time parents hear the news of a diagnosis will stay with them forever.

We are delighted to provide resources and training to maternity units to ensure expectant and new parents have access to contemporary information about the reality of having a child with Down syndrome.

If you are a health care professional and would like to display/offer our resources, please get in touch.

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What our families say