About Down Syndrome UK
Down Syndrome UK (DSUK) is a national charity passionate about empowering parents and professionals to improve the lives of those with Down syndrome and their families in the UK.
We want our children to be valued and included in the communities in which we live, to have the choice to attend their local mainstream school and when old enough to work; not to encounter barriers, but instead to be welcomed and embraced within society.
Our initiatives
Positive About Down Syndrome Community
Providing information, support and resources to expectant, new and preschool parents.
Heart Buddies Support
Heart Buddies are parents who have been through similar procedures with their little ones and volunteer to provide understanding, support, and practical advice throughout the journey from hospital appointments to recovery.
Pants 4 School Programme
Enabling children with Down syndrome to be toilet trained in time to start in pants4school!
Online Physiotherapy Sessions
Our online physiotherapy sessions (previously known as POPS!) provide guided support through key developmental stages, helping children build strong physical foundations at their own pace. With patience and dedication, each stage is carefully followed to support long-term mobility and confidence.
Early Years Development Parent Groups
Our Early Years Development Parent Groups (previously known as PEGS) provide parents with expert-led, research-based early intervention activities to support their child’s development through everyday routines. Through short, accessible videos, our specialists equip parents with the knowledge and confidence to promote learning and growth at home and in nursery settings.
EHCP Support Service
Our EHCP Support Service provides expert guidance on the EHCP process through online support groups, 1:1 drop-in sessions, and a detailed draft review service. Led by one of our specialists, this service helps DSUK families navigate applications, reviews, and parent representations with confidence.
DLA Support Service
Our Disability Living Allowance (DLA) service provides parents with expert guidance and support to navigate the application process for this essential benefit. Led by one of our specialists, our regular drop-in sessions empower families with the information they need to access financial support for their child’s additional needs.
Early Years Development Programme for Professionals
The Early Years Development Programme (EYDP) provides early years professionals with comprehensive information, guidance, and ongoing support to help children with Down syndrome thrive. This programme equips educators with the knowledge and strategies to support development through tailored learning and play.
Primary Education Programme
The Primary Education Programme (PEP) provides primary schools with expert guidance, accredited training, and practical resources to support pupils with Down syndrome. Through ongoing support, CPD-accredited courses, and evidence-based strategies, PEP empowers educators to create inclusive learning environments tailored to each child's needs.
Individualised Behaviour Support
This specialised service is designed to help schools better understand behaviour challenges and build on social strengths to encourage positive behaviours in children with Down syndrome. Through expert guidance from Dr Becky Baxter, the programme provides practical strategies, tailored support, and a structured approach to developing effective behaviour plans in schools.
Support Group Network
We provide a huge amount of support and information online that is available 24/7; however, we really value and appreciate the importance of local support groups for children and young people with Down syndrome to make local friendship circles, as well as to access local specialist services.