Rare on Air: Małgorzata Kosla

Rare on Air: Małgorzata Kosla https://www.eurordis.org/rare-on-air/ 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 diagnosed with an ultra-rare neurodevelopmental condition caused by a mutation in the PACS2 gene. Over the past three years, Gosia and her family have helped build a global, patient-led research effort. Gosia also offers a candid perspective on patient-led research in Europe.