Work-life balance Directive fact sheet

The Council of the EU has adopted the Work-Life Balance Directive, a piece of legislation that will help working parents and carers to reconcile work and family responsibilities. The Directive includes positive steps including, among others, that workers now have an individual right to carers’ leave of 5 working days per year.

EURORDIS, with the support of the Social Policy Advisory Group, contributed to the European Parliament discussion on the Directive, explaining how challenges faced by people living with a rare disease and their carers should been taken into account. We also submitted amendments to the text. Although it is necessary to wait to see how Member States will implement the Directive, it definitely constitutes a big step forward and has the potential to bring concrete improvements to the lives of rare disease patients and their carers.

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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