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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The voice of rare disease patients in EuropeEURORDIS The international voice of people living with rare diseasesRare Disease International Bringing together patients, families and experts to share experiences in a moderated multi-language forum. RareConnect The Rare Barometer Programme is a EURORDIS initiative that carries out surveys to transform rare disease patients' experiences into figures and facts that can be shared with decision-makers.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 Join the largest gathering of rare disease stakeholders across Europe, at the biennial European Conference on Rare Diseases and Orphan Products. ECRD is a EURORDIS initiativeEuropean Conference on Rare Diseases