Raising awareness on World Down Syndrome Day and beyond

The World Down Syndrome Day was designated by the United Nations to be celebrated each year on 21 March to raise awareness and increase understanding of this congenital condition. The European Commission is supporting a number of research projects that aim to improve the prevention, diagnosis, treatment and social integration of people with Down Syndrome.

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 600-1 000 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 in the average maternal age, as the condition is known to be more frequent in children born to older mothers.

Scientists also point to regional differences in pregnancy outcomes and prenatal diagnoses 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 affected by Down 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 has been dedicated to improving the prevention, diagnosis, treatment and social integration of patients with inherited conditions, including EUR 5.5 million for 9 projects that focus specifically on Down Syndrome.

Europe-wide database on congenital anomalies

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

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

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

EUROCAT's Central Database, which contains about 800 000 cases of congenital anomalies (including Down Syndrome), is updated on an annual basis.

Related Content

JRC Technical Report - European Monitoring of Congenital Anomalies: JRC-EUROCAT Report on Statistical Monitoring of Congenital Anomalies (2006 –2015)

Rare Diseases – a secure and sustainable solution for the registration of congenital anomalies in Europe