Empowering the Down Syndrome Community Since 2017
At Down Syndrome UK (DSUK), we believe in potential without limits. From the moment of diagnosis through to adulthood, we provide the lived-experience support, resources, and advocacy families need to thrive.
Every family’s journey with Down syndrome is different. Our impact is about what changes because DSUK is there – how parents feel, what professionals do differently, and how children and young people are better supported to thrive.
During 2023–2024, we continued to grow from a charity focused on maternity and early years into one supporting families, professionals and schools right through childhood and beyond.
Our Journey: 2017 - 2024
Our timeline reflects a deep commitment to filling gaps in support and education. In the last year alone, we have significantly expanded our reach:
Supporting families at every stage
From pregnancy onwards, we support families with practical information, expert guidance and connection to others who understand.
In the past year:
- We supported expectant parents through our pregnancy groups and ‘Great Expectations’ programme.
- We continued to grow our PADS community, supporting families from the early years through preschool, primary school and beyond.
- We launched and expanded support for parents navigating key pressure points such as starting school, EHCPs and Disability Living Allowance applications.
- Through Heart Buddies, we supported families whose children were undergoing heart surgery, offering peer support at some of the most difficult moments.
Parents consistently tell us that DSUK helps them feel less alone, more confident, and more hopeful about their child’s future.
Building confidence, connection and hope
Listening to families is central to everything we do. Our 2024 parent survey shows the difference DSUK makes emotionally as well as practically.
97% of parents said PADS was supportive
93% said PADS was non-judgemental
90% said PADS was inspiring
92% agreed PADS is their go-to place for advice, questions and support
Parents also report increased confidence, stronger connections with other families, and greater optimism about their child’s future.
Tip: move through each fact using the Tab key. Each card highlights when focused.
74%
feel more confident supporting their child
53%
have built connections with other parents
66%
say their child has benefited directly from our advice/resources
84%
have a better understanding of Down syndrome
76%
feel more positive about their child’s future
51%
advise their family feels more supported
Changing maternity care and healthcare practice
Improving maternity care remains a core part of our work.
This year we:
- Distributed hundreds of maternity packs to units across England and Wales
- Continued training for midwives, health visitors and maternity professionals
- Collaborated with the Royal College of Midwives on i-learning modules
- Shared research highlighting gaps in mental health support for mothers of babies with Down syndrome
Our research shows a stark difference between the mental health experiences of mothers in the general population and those with a baby with Down syndrome. This evidence strengthens our case for change and underlines why our work with professionals matters.
Only 38.1% of mothers of babies with Down syndrome felt they received adequate mental health support, compared to 85% nationally.
Reaching professionals across the UK
Alongside family support, we work to educate and empower professionals so that change is systemic, not just individual.
During the year we:
- Supported nearly 2,000 professionals across health and education.
- Hosted webinars attended live by hundreds more, with recordings accessed widely afterwards.
- Launched our Early Years and Primary Programmes to pilot groups of education professionals.
Professionals consistently tell us that our training is practical, strengths-based and grounded in lived experience.
Community, connection and belonging
Community is at the heart of DSUK.
Through PADS groups, information sessions, local events and national gatherings, families build relationships that last far beyond a single programme or service. Events such as Party in the Park and our Celebratory Ball create space for joy, pride and shared experience.
We are continually inspired by the parents, carers and volunteers who give their time to support others in our community.
