Raising awareness on World Down Syndrome Day and beyond

Down syndrome is a congenital condition resulting from a chromosomal defect. It is associated with many physical and learning disabilities, as well as increased health risks.

Over 43 % of all babies with Down syndrome suffer from heart defects. Currently, 1 out of every 600-1000 babies born in Europe is affected with Down Syndrome.

In Europe, the prevalence of Down Syndrome has increased over time and scientists attribute this to the steady increase of the average maternal age, as the condition is known to be more frequent in children born to older others.

Scientists also point to regional differences in pregnancy outcomes and prenatal diagnosis across Europe.

The variations are attributed to different national policies regarding the termination of pregnancies for foetal anomalies, as well as the availability and provision of prenatal screening.

Focus on social inclusion and quality of life

The EU promotes the social inclusion of people with Down syndrome through the European Disability Strategy 2010-20, which aims at eliminating barriers linked to the accessibility, participation, employment, education, training, social protection and health of people effected by Downs Syndrome.

Improving the quality of life of children born with Down syndrome or other inherited congenital conditions is also a longstanding priority for the European Commission throughout the EU Framework Programmes for Research.

Since 2007, EUR 196 million were devoted to improving the prevention, diagnosis, treatment and social integration of patients with inherited conditions, including EUR 5.5 million with 9 projects focusing specifically on Down syndrome.

Europe-wide database on congenital anomalies

JRC scientists contribute to the understanding of epidemiology of Down syndrome across Europe, including prevalence, trends and prenatal detection.

This work aims to ultimately support tailor-made policies for healthcare and services for people affected with Down's Syndrome.

In the framework of the European Platform on Rare Diseases Registration, the EC's Joint Research Centre (JRC) operates the Central Registry of EUROCAT, a network of 39 active population-based registries for the epidemiological surveillance of congenital anomalies covering about 1/3 of the European births (approx. 1.7 million births/year).

The EUROCAT Central Database is annually updated and contains about 800.000 cases of congenital anomalies, including Down syndrome.