Rare on Air

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...

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%...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...

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...