ERNs on Air: Practical tools for patient partnership in the ERNs

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Rare on Air

EURORDIS

57 episodes

3 weeks ago

A EURORDIS-Rare Diseases Europe podcast on the experiences, challenges and successes of people living with rare diseases. Julien Poulain, Communications Manager at EURORDIS, meets with people who share their unique experiences of living with a rare disease, those who advocate for them, and experts on rare disease policy. Email the EURORDIS Rare on Air team at: rareonair@eurordis.org.

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ERNs on Air: Practical tools for patient partnership in the ERNs

Rare on Air

18 minutes 32 seconds

2 months ago

ERNs on Air: Practical tools for patient partnership in the ERNs

In this episode of ERNs on Air, Ines Hernando (ERN & Healthcare Director, EURORDIS) is joined by Olivia Spivack (ERN Implementation Coordinator at ERN ERNICA, and researcher) and Mirthe Klein Haneveld (Researcher, ERN ITHACA) to discuss the Patient Partnership Framework for European Reference Networks. They explain why the framework was developed, its core elements and enablers, and practical tools to capture patient voices. The conversation also addresses practical challenges – such as ensuring diversity and setting up support structures for ePAG representatives.

Explore the Patient Partnership Framework for ERNs:

https://www.eurordis.org/publications/patient-partnership-framework-for-erns/

Read the scoping review co-authored by Mirthe Klein Haneveld and Olivia Spivack:

https://pubmed.ncbi.nlm.nih.gov/39708237/