Improving the care and prevention of congenital disorders
Each year around five million babies are born with congenital disorders (also called 'birth defects'). As deaths from infectious diseases fall, they are becoming the leading cause of childhood death in many countries.
Congenital disorders represent a large group of abnormalities ranging from inherited diseases to physical disabilities such as cleft palate, club foot and spina bifida. Most have underlying genetic causes, although environmental factors can also cause or worsen them.
What can we do?
The short answer is - we can do a lot. Where services are available, as many as 70% of congenital disorders can be prevented or treated, and care greatly improved. Sadly, for many people, especially in low and middle income countries, even simple, affordable interventions that would have a major impact are not available.
The PHG Foundation Health Needs Assessment Toolkit for Congenital Disorders enables users to develop or reformulate policies, programmes and services to reduce the burden of disease on individuals, families and the wider society.
This process provides access to international data and a roadmap to assessing health needs related to congenital disorders in local populations. The Toolkit equips users to prepare strategies to improve care, and reduce the birth prevalence, morbidity and mortality associated with birth defects.
In May 2010, the World Health Assembly passed a resolution calling on member states to act to address the current lack of focus on birth defects in order to progress the achievement of UN Millennium Development Goal 4. In developing the Toolkit, the PHG Foundation is providing a practical solution to assist in the improvement of health outcomes of people with congenital disorders and reduce the burden of these disorders.
The Toolkit can be used at national and sub-national levels, by anyone wishing to develop the evidence base to give greater priority to the problem of congenital disorders and to develop the necessary policies for the implementation of effective interventions.
You can access the Toolkit here.
- Using PHGF Toolkit to uncover burden of NTDs in India
- Review of Toolkit published
- A global roadmap to address birth defects at the local level
- Brazilian Congress of Medical Genetics 2012
- International birth defects workshop and launch of Born Healthy
As well as the many experts taking part in this programme, we are delighted to acknowledge support from the following organisations.