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.
ERNs on Air: The Sudden Cardiac Death Letter and patient partnership in ERN GUARD-Heart
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/ (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).
26 Feb 2026
Rare Disease Day: Stephanie's story
In this episode of Rare on Air, Rhiannon Walls reads the story of Stephanie, whose daughter lives with LIG4 syndrome, a rare genetic condition that took years to identify.
Stephanie reflects on the confusion and fear of repeated medical emergencies, the long period of misdiagnoses, and the difficult decision to seek specialist care abroad. Through it all, she speaks openly about the realities of being a parent navigating an unpredictable illness, the setbacks, the determination, and the constant search for answers.
Her story offers an honest look at caregiving in the face of diagnostic uncertainty and the strength that comes from refusing to give up on finding the support her daughter needs.
19 Feb 2026
Rare Disease Day: Ren's story
In this episode of Rare on Air, Rhiannon Walls reads the story of Ren, who lives with Congenital Panhypopituitarism, a condition where the pituitary gland fails to produce essential hormones from birth.
Ren reflects on growing up with a body that couldn’t regulate growth, stress, or metabolism, and the lifelong treatments that shaped her childhood and adulthood. She speaks candidly about the medical emergencies she has faced, the emotional weight of infertility, and the unexpected paths that led her to motherhood.
Her story offers insight into living with a condition so rare she has never met another woman with it, and why sharing her experience has become a way to create connection, raise awareness, and support others on similarly isolated journeys.
Reach and audience
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Spotify
4.9 / 5
11 ratings
Podcast Authority Score: 47 / 100
A composite of feed quality, social presence, YouTube performance and engagement. Read the methodology.
Quality
66
Social presence
0
YouTube
0
Engagement
68
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