The PHG Foundation has handed over a pioneering toolkit to help tackle the problem of birth defects for people living in low and middle income countries. Birth defects (or congenital disorders) are rapidly replacing infectious diseases as a leading cause of childhood death and disability around the world. Despite calls by the World Health Organization for member states to take action, birth defects remain a relatively neglected issue due to complexity and the lack of ready access to data, knowledge and tools to achieve real change.
The PHG Foundation has spent five years developing the toolkit which contains the best available data on birth defects for 192 countries and detailed expert guidance on what can be done – often with simple interventions – to improve prevention, diagnosis, treatment and care. The toolkit, aimed at health professionals and planners, guides users through the process of developing solutions which are relevant to their local needs and securing commitment to action from decision-makers. The toolkit encourages the involvement of local stakeholders in the planning process.
Now freely available online and with registered users in 146 countries, the toolkit has already played a significant role in changing government policy on newborn screening in Uruguay, and informing Brazil’s rare diseases policy.
At a ceremony in Porto Alegre, southern Brazil on Saturday (5 April) attended by health leaders and policy makers, the PHG Foundation’s Director, Dr Hilary Burton handed over the toolkit to a consortium including the Universidade Federal do Rio Grande do Sul, the Hospital de Clínicas de Porto Alegre and INaGeMP, the Brazilian National Institute for Medical and Population Genetics. As ongoing custodians they will ensure the toolkit is kept up to date and promote its uptake throughout Latin America and the rest of the world through their networks in the international health community.
Dr Hilary Burton said:
“We are delighted to pass on the PHG Foundation toolkit for birth defects into the safe hands of our Brazilian colleagues who have been such important supporters of this project from the outset. Having invested 5 years’ work in developing the toolkit, the Foundation is confident that the team in Porto Alegre will ensure its legacy, catalysing changes in healthcare that will provide a healthier start and a brighter future for children all round the world”.
The toolkit is freely available online at http://www.toolkit.bornhealthy.org/
Further information on the PHG Foundation or the toolkit may be found at http://www.phgfoundation.org/