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Alexion, in collaboration with the Center for Public Policy and Government Studies of the General Foundation of the University of Alcalá (CEPPyG) and endorsed by the Andalusian School of Public Health (EASP), has published the fifth report of the Legislative Observatory of Rare Diseases and Orphan Drugs: 'Tools for the diagnosis of Rare Diseases: newborn screening'.
The report has been prepared by a multidisciplinary group of experts who work to identify the main legislative challenges to improve the quality of life of patients with rare diseases in Spain and can be found in its entirety on the web 3 millones ya no es raro. It highlights the existing inequity in neonatal screening programs in our country, varying from 8 to 40 diseases depending on the autonomous community (1). In addition, recommendations and legislative measures are proposed with the aim of standardizing neonatal screening programs in the Spanish territory. 92% of the diseases diagnosed in screening programs are rare diseases (2).
References:
1. Ministry of Health. Evaluation report of the Newborn Screening Program of the National Health System (year 2019) Access at:
2. Legislative Observatory of Rare Diseases and Orphan Drugs. Tools for the diagnosis of Rare Diseases: neowborn screening.