Dear future sisters
A heartfelt letter from a newborn girl with Down syndrome to her future adopted sisters. A powerful story of IVF, adoption, love and the unbreakable bond that will make them an extraordinary team.
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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.
Down Syndrome Awareness Month
This October, we’re celebrating our “TO BE” campaign. The campaign is a celebration of individuality, focusing on what every person with Down syndrome deserves “to be”, what they aspire “to be” and what they are proud “to be”.
Feature your child in our 2026 calendar!
We’re so excited to launch pre-orders for the Down Syndrome UK 2026 Calendar.
This year’s calendar will be filled with the smiling faces of children from our wonderful DSUK community – and by pre-ordering now, your child can be featured too.
Help us launch a Secondary Education Programme!
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.
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.
Join us for one of our upcoming events
Read our blog
Spotting infantile spasms: Parents share their lived experiences
Practical tips from parents to help children with Down syndrome adjust to wearing glasses or hearing bands. Real experiences, gentle strategies, and everyday routines to build confidence.
Encouraging and Supporting Age Appropriateness: Real-parent tips
Discover parent-led advice and practical strategies to support age-appropriate activities for children with Down syndrome. Celebrate individuality while encouraging independence, play and confidence.
We've launched our new socks!
Discover our range of gifts that make a difference – from soft, colourful socks and empowering clothing that help raise awareness of Down syndrome, to beautiful Christmas cards and festive gifts designed by talented artists with Down syndrome. Every purchase supports Down Syndrome UK and helps us continue our vital work for children, families, and schools across the UK.
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.
