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Hosted by EURORDIS · 🇺🇸 US · EN · 65 episodes
Established thought leaders with verified media credentials.
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.
EURORDIS hosts Rare on Air, a health show with 65 episodes published.
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
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 g
In this episode of Rare on Air, Julien Poulain reads the story of Loago, from Botswana, who was diagnosed with Gaucher disease as a teenager. Loago reflects on the challenges that followed his diagnosis, from leaving sch
In this episode of Rare on Air, Rhiannon Walls reads the story of Hong-Ahh, whose son Léon lives with LAMA2-related congenital muscular dystrophy, a rare and progressive neuromuscular condition. Hong-Ahh shares her early
In this episode of Rare on Air, Rhiannon Walls reads the story of Jessa, an 18-year-old living with multiple rare conditions, including Ehlers-Danlos Syndrome, Mixed Connective Tissue Disease, and juvenile arthritis. Jes
In this episode of Rare on Air, Julien Poulain reads the story of Ken, whose life has been deeply shaped by Huntington’s disease, as a full-time carer for his mother with the condition and as someone living with a 50% ge
In this episode of Rare on Air, host Julien Poulain speaks with Małgorzata 'Gosia' Kosla, a rare disease advocate and mother of twins, Lena and Zuzia. Gosia’s journey into advocacy began in February 2022, when Lena was d
In this episode of Rare on Air, Rhiannon Walls reads the story of Christine, who lives with Granulomatosis with polyangiitis (GPA), a rare and serious autoimmune condition. Diagnosed at just 24 after a sudden and life-th
In this episode of Rare on Air, Rhiannon Walls reads the story of Annarita, from Italy, who lives with Charcot-Marie-Tooth disease type 2Z. Diagnosed in her late teens after years of uncertainty, she reflects on the shif
In this episode of our bonus Rare on Air Stories series, Julien Poulain reads the story of Ahmed, a Pakistani professional and advocate whose long path to a diagnosis of Primary Ciliary Dyskinesia (PCD) reshaped his life
In this episode of ERNs on Air, Ines Hernando (ERN & Healthcare Director, EURORDIS) is joined by Olivia Spivack (ERN Implementation Coordinator at ERN ERNICA, and researcher) and Mirthe Klein Haneveld (Researcher, ERN IT
In this episode of Rare on Air, host Julien Poulain speaks with Inês Alves, a Portuguese advocate, researcher, and mother whose journey into rare disease advocacy began with her daughter Clara’s diagnosis of achondroplas
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 representat
In this episode of Rare on Air, host Julien Poulain speaks with Tomasz Grybek, a Polish economist, rare disease advocate, and father to a teenage son living with metachromatic leukodystrophy (MLD), a progressive and life
In this episode of Rare on Air , host Julien Poulain speaks with Nick Sireau, CEO of the AKU Society and father to two sons living with alkaptonuria. Nick shares how his son’s unexpected diagnosis led him to become a lea
In this Rare on Air Stories bonus episode marking Rare Disease Day, we share Noah’s journey from the United States. Diagnosed with Meesmann Corneal Dystrophy, a rare genetic eye condition, Noah endures chronic pain and v
In this Rare on Air Stories bonus episode marking Rare Disease Day, we share the story of Eden from the UK. Diagnosed as a baby with CMTC (Cutis Marmorata Telangiectatica Congenita), Eden faced challenges with social sti
In this episode of our Rare on Air Stories bonus series marking Rare Disease Day, we meet Do Phuoc Huy from Vietnam, who has lived with an undiagnosed rare condition for 17 years. Initially misdiagnosed and misunderstood
In this episode of our Rare on Air Stories bonus series marking Rare Disease Day, we share Sushmita’s powerful journey with Amelogenesis Imperfecta (AI), a rare genetic condition affecting the development of tooth enamel
In this Rare on Air Stories bonus episode marking Rare Disease Day, we share the story of Sophia, who lives with a rare RARB gene mutation. Due to the unavailability of genetic testing, her diagnosis was delayed until ag
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Rare on Air is hosted by EURORDIS. The show is categorised under health (fitness) and has published 65 episodes.
Rare on Air has published 65 episodes.
Rare on Air regularly covers health, fitness. It sits in the health category, with a fitness focus.
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Episodes of Rare on Air average 12 minutes. a focused format where a clear narrative arc and tight preparation matter most.
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