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.
esourceNet – 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.