ERNs on Air: Tackling medicine shortages for rare endocrine conditions

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Rare on Air

EURORDIS

54 episodes

1 week 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.

Health & Fitness

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Health & Fitness

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ERNs on Air: Tackling medicine shortages for rare endocrine conditions

Rare on Air

21 minutes 54 seconds

1 month ago

ERNs on Air: Tackling medicine shortages for rare endocrine conditions

In this episode of our bonus podcast series, ERNs on Air, host Julien Poulain hands over to Nora Lazaro (EURORDIS ERN and Healthcare Patient Engagement Manager) for a conversation with Johan de Graaf (patient representative and co-chair of the ENDO-ERN ePAG) and Emily White (project manager for the ENDO-ERN coordination team).

Together, Nora, Johan and Emily explore a patient-led initiative to map inequities in endocrine medicine provision across Europe, using data gathered through three surveys. Recognised as one of the winners of the EURORDIS 2025 Patient Partnership Good Practice Challenge, this project highlights both the persistent gaps in access to essential treatments and the power of collaboration between patients, clinicians and project managers to bring about systemic change.