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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La voz de los pacientes de enfermedades raras en EuropaEURORDIS La voz internacional de las personas que tienen enfermedades rarasRare Disease International Reuniendo a pacientes, familiares y expertos para compartir experiencias en un foro moderado en distintos idiomas. RareConnect El Programa Rare Barometer es una iniciativa de EURORDIS que realiza encuestas para transformar las experiencias de los pacientes con enfermedades raras en cifras que puedan compartirse con los responsables políticos.Rare Barometer Una campaña internacional de sensibilización que se celebra todos los años el último día de febrero, El Día de las Enfermedades Raras es una iniciativa de EURORDISRare Disease Day Únete al mayor grupo de partes interesadas en toda Europa, en la Conferencia Europea sobre Enfermedades Raras y Medicamentos Huérfanos que se celebra cada dos años. ECRD es una iniciativa de EURORDISEuropean Conference on Rare Diseases