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Bridging the gaps between health, social and local services to improve care
of people living with rare and complex conditions
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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.

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What we do
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.

Our activities

Latest resource

Bridging the gaps between health and social care: results of the EU-funded project INNOVCare (2018)

November 20, 2018Editor
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Latest event

05Sep2018

Conference on Advancing person-centred & integrated care for rare diseases & complex conditions across Europe

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Logo Salaj CountyLogo EURORDISLogo FinovatisLogo Institute for Economic ResearchLogo Karolinska InstituteLogo Romanian Prader Willi AssociationLogo Zentrum für Soziale Innovation
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This project is co-funded by
the European Union
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The information contained in this publication does not necessarily reflect the official position of the European Commission.