of people living with a rare disease have to visit different health, social and local support services in a short space of time*
of people living with a rare disease and carers say that different services communicate badly between them*
of carers for people living with a rare disease spend more than 6h per day on health-related tasks*
of patients and carers were absent from work due to health-related issues for over 30 days in the last 12 months*
*This survey was conducted via EURORDIS survey initiative, RareBarometer Voices, and in the scope of the INNOVCare project.
The serious unmet social and daily life needs of people living with a rare disease or a complex condition affect their dignity, their autonomy and their fundamental human rights expressed in the Universal Declaration of Human Rights and in the United Nations Convention of the Rights of Persons with Disabilities
INNOVCare gives a voice to the social and everyday needs of people living with a rare disease and addresses the need for coordination between service providers in European Union Member States.
The project is developing and testing a holistic, person-centred care pathway that links health services to social and support services, which people living with a rare disease or complex condition use on a daily basis.
This care pathway aims at ensuring the transfer of information and expertise between service providers and at relieving the burden of care management for patients and families.
