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Listen "ERNs on Air: EURACAN Registry - Developing a long-term vision together"
Episode Synopsis
In the 4th episode of ERNs on Air, EURORDIS ERN and Healthcare Patient Engagement Manager, Nora Lazaro, talks to Emma Kinloch, ePAG advocate at EURACAN ERN, and Annalisa Trama, epidemiologist and registry coordinator in EURACAN ERN, about how the patient representatives from EURACAN contributed to the set up and develop of a patient registry for adult rare cancers. They discuss what registries are, why we need them and why patient involvement is crucial to their longevity.
More episodes of the podcast Rare on Air
Rare Disease Day: Ken's story
08/01/2026
Rare Disease Day: Christine's story
18/12/2025
Rare Disease Day: Annarita's story
04/12/2025
Rare Disease Day: Ahmed's story
20/11/2025
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