Podcast: Rare on Air

https://www.eurordis.org/rare-on-air/ Should more diseases be screened for at birth? In our latest episode of Rare on Air, Julien Poulain talks to Iuliana Dumitriu, the mother of Victor, an eight-year-old boy living with Coffin-Lowry Syndrome in Romania. Iuliana, who is also the President of the Coffin-Lowry Syndrome Association shares with Julien her family’s story of the torturous, yet determined, seven-year journey toward receiving a diagnosis for Victor. Julien also explores the results of our recent Rare Barometer survey with our Social Research Director Jessie Dubief.