Health guidelines

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, our 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 the 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. 

Example - consensus document on cardiac disease

We are currently collaborating with international clinical experts to create an up-to-date review and expert consensus document on cardiac disease in Down syndrome.

Read more

Example - Guidelines for thyroid disorder in children and young people with Down syndrome

We have been involved in the development of these guidelines which we hope will improve the care and treatment of children and young people with Down syndrome with thyroid disorder.

Read more

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. 

Health training

We provide 'Training of Trainers' to prepare doctors and nurses to train other medical professionals on what Down syndrome is, how to diagnose it, and how to provide the best possible healthcare to people with Down syndrome of all ages.

The challenge

In many countries worldwide medical professionals have a poor understanding of what Down syndrome is. They often do not know about associated medical conditions or how to ensure that people with Down syndrome maintain the best possible health throughout their lives.

What we do

We provide participants with the skills and knowledge to train other medical professionals about Down syndrome. This includes:

  • What Down syndrome is, how it can be diagnosed and associated medical conditions;
  • Best practices for providing health services to people with Down syndrome throughout the lifespan;
  • Clinical screening to identify medical conditions associated with Down syndrome as early as possible;
  • How to interact sensitively and effectively with people with Down syndrome and their families.

Example - Oman

In Oman we trained a group of 24 doctors and nurses over 4 days to prepare them to train other medical professionals about Down syndrome. The project was supported by UNICEF and the Oman Ministry of Health.

Read more about the project here:

Oman health training

Long term impact

Training doctors and nurses ensures best possible healthcare for people with Down syndrome.

Our health training leaves behind a group of skilled trainers on health and Down syndrome, which is an invaluable resource for the country they are based in. This group can train the country's medical professionals to ensure they understand Down syndrome and how to provide people with Down syndrome with best possible healthcare.

This is likely to have an enormous positive impact on the healthcare that people with Down syndrome receive. Good healthcare is essential for people with Down syndrome to lead healthy lives. Being healthy is a necessary foundation for leading a fulfilling life and being able to take part in society on an equal basis with others.

Read about our other areas of work here: