EURORDIS promotes the implementation of services adapted to the needs of people living with a rare disease and provides:
* Connect with a patient organisation
* Rare disease helplines: offer social, psychological and information solutions to people living with a rare disease.Specialised Social Services are instrumental to the empowerment of people living with rare diseases and essential to the improvement of their well-being and health.
* Find a specialised Social Service
* Medical expertise

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Guide on patient partnerships in rare diseases research projects

Provided by European Joint Programme on Rare Diseases (EJP RD)

EJPRD

The EJP RD has developed a short guide on patient partnerships in rare diseases research projects. It aims to encourage fruitful, sustainable and enduring partnerships between scientists and patient organisations, co-leading the way for systematic patient-centered research.

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