Key principles for newborn screening

January 2021

Early diagnosis leads to a better life for people living with a rare disease. Newborn screening is a way to provide this: families are able to plan better for their child’s care and treatment, and make informed decisions about future pregnancies. In many cases, this early intervention prevents severe disabilities from developing and can save lives.

Yet across Europe today there are significant discrepancies between the policies and programmes for Newborn Screening.

For the first time, EURORDIS, alongside its Council of National Alliances, Council of European Federations and its members, have set out 11 Key Principles to support an harmonised European approach to Newborn Screening. The vast inequalities across Europe, coupled with technological and scientific advances highlight the urgent need to move forward from the status quo.

We are calling on European Union institutions and Member States to adopt these Key Principles to guarantee the human right of achieving the highest standard of health for all newborns.

Read the full paper

 

 
 
A voz das pessoas com doenças raras na EuropaEURORDIS A voz internacional das pessoas com doenças raras, Rare Diseases InternacionalRare Disease International Reúne doentes, famílias e especialistas para partilhar experiências num fórum multilinguístico. RareConnect O programa Rare Barometer é uma iniciativa da EURORDIS para a realização de inquéritos para transformar a experiência das pessoas com doenças raras em números e factos que podem ser partilhados com os responsáveis pela tomada de decisões.Rare Barometer An international awareness raising campaign taking place on the last day of February each year, Rare Disease Day is a EURORDIS initiativeRare Disease Day Adira ao maior encontro europeu das partes interessadas no âmbito das doenças raras na Conferência Bienal Europeia sobre Doenças Raras e Produtos Órfãos. A ECRD é uma iniciativa da EURORDISEuropean Conference on Rare Diseases