In this episode of ERNs on Air, Julien Poulain hands over to Nora Lázaro, Patient Engagement Manager for ERNs & Healthcare at EURORDIS, for a conversation with Ruth Biller, ePAG Lead in ERN GUARD-Heart, and Lia Crotti, a clinician in the network.
Together, Ruth and Lia explore the Sudden Cardiac Death Letter for families, a patient-led initiative developed within ERN GUARD-Heart. They discuss how patients’ lived experience helped identify an unmet need, how collaboration with clinicians shaped the resource, and what the initiative can teach us about putting patient partnership into practice across the European Reference Networks.
Find out more about the Sudden Cardiac Death Letter for the Family:
https://guardheart.ern-net.eu/experts/forms/sudden-cardiac-death-letter/
ERN GUARD-Heart is looking to make the letter available in more languages. To get involved, contact [contact@guardheart.ern-net.eu](mailto:contact@guardheart.ern-net.eu).
