PHG toolkit in Brazil 2014 transfer deal

PHG Foundation director, Hilary Burton, was in Brazil last week to officially hand over ownership of the PHG Foundation-developed Health Needs Assessment Toolkit for Congenital Disorders, to a consortium from a national centre of excellence in genetics and congenital disorders based in Porto Alegre.

At a ceremony in Porto Alegre, southern Brazil on Saturday 5 April and attended by health leaders and policy makers, the PHG Foundation’s Director, Dr Hilary Burton, handed over its Health Needs Assessment Toolkit for Congenital Disorders to the Brazil-based consortium.

As ongoing custodians of the toolkit, 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 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.

The PHG Foundation has spent five years developing the toolkit which provides detailed expert guidance on what can be done – often with simple interventions – to improve prevention, diagnosis, treatment and care. 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.

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