We are developing international health guidelines with the aim to improve the health of people with Down syndrome around the world, to contribute to the realisation of their right to health and to reduce health inequities in line with the principles of the Constitution of the World Health Organisation.

The challenge

There is a pressing need to address the global disparity in services and facilities in healthcare for people with Down syndrome. There are currently no training resources or best practice international guidance documents relating to medical conditions particularly common to people with Down syndrome. Without these, people with Down syndrome across the world may not receive the healthcare they require to be able to lead full, healthy lives and to achieve their full potential. 

What we are doing 

Unlike existing guidelines for the healthcare of people with Down syndrome, these guidelines will be based on international consensus. We are working with key experts and health professionals from across the world in their development. Feedback will be obtained from key stakeholders from our global network, including people with Down syndrome, their families and supporters and representatives from national Down syndrome organisations.To ensure accuracy and to maximise international value we are using rigorous guideline development methodology.

The health guidelines will comprise a set of guideline documents each addressing a specific medical condition particularly common to people with Down syndrome. Each health guideline is condition specific and can cover any aspect of the condition across the life span of a person with Down syndrome and may include recommendations about providing information and advice on prevention, diagnosis, treatment or long-term management. 

Long term impact

The guidelines will improve health outcomes and ultimately save lives.

They will be disseminated via our global network to healthcare professionals, Down syndrome and related healthcare and disability organisations and to commissioners of services. 

They will provide a global reference point and a lobbying tool to encourage countries to develop their own guidelines and adoption of best practices. 

Example - cardiac guidelines

We are currently developing international guidelines for cardiac (heart) disorders associated with babies, children, young adults and adults with Down syndrome.

Cardiac Guidelines

Read about our other areas of work here: