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Listen "The Journey of European Reference Networks"
Episode Synopsis
In our first episode of Rare on Air, Julien Poulain interviews Yann Le Cam, Chief Executive Officer of EURORDIS-Rare Diseases Europe, as we take a trip down memory lane with the European Reference Networks (ERNs).
Later in the episode, we hear a conversation on how the ERNs began, led by Rita Francisco, EURORDIS' Patient Engagement Junior Manager, and Sarah Weiler from the Luxembourg National Alliance for Rare Diseases.
Finding the right expert to access care for a rare disease remains a challenge for many of the 30 million people living with a rare disease in Europe. To address these challenges, the EU created 24 ERNs in 2017. These ERNs have been striving to bring about a Europe in which clinical expertise can travel across borders, so that patients themselves do not have to.
Later in the episode, we hear a conversation on how the ERNs began, led by Rita Francisco, EURORDIS' Patient Engagement Junior Manager, and Sarah Weiler from the Luxembourg National Alliance for Rare Diseases.
Finding the right expert to access care for a rare disease remains a challenge for many of the 30 million people living with a rare disease in Europe. To address these challenges, the EU created 24 ERNs in 2017. These ERNs have been striving to bring about a Europe in which clinical expertise can travel across borders, so that patients themselves do not have to.
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