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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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Resource centres for rare diseases

A one-stop shop style service designed for people living with rare diseases and their carers.

Resource centres for rare diseases are a one-stop shop service, complementary to health and social care services, specifically designed for people living with a rare disease and their carers. Resource centres provide holistic services and support, while also creating a bridge between patients and families and various stakeholders, services and professionals providing health care, social care, and social support – including rehabilitation, education and employment.

Examples of resource centres for rare diseases:

  • Ågrenska, Sweden; Casa dos Marcos, Portugal; Centro de Referencia Estatal de Atención a Personas con Enfermedades Raras, Spain; Debra Centre, Croatia; Eesti Agrenska, Estonia; Frambu, Norway; NoRo, Romania; list of resource centres in Europe.

RareResourceNet – European Network of Resource Centres for Rare Diseases

Advancing holistic high quality care and services for people living with rare diseases across Europe.

RareResourceNet – the European Network of Resource Centres for Rare Diseases – aims at accelerating the development and the implementation of holistic high quality care pathways for people living with a rare disease across Europe, to contribute to raise standards of care and support.

Find more information on RareResourceNet’s mission, objective and membership here. 

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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.