In this episode of Rare on Air, Julien Poulain welcomes Virginie Duigou, President of Neuro IFF France (https://neuroifffrance.my.canva.site/).
Virginie leads a patient association forged only one year ago from the experiences of families and individuals profoundly affected by Fatal Familial Insomnia (FFI), an ultra-rare disease with a global prevalence of less than one in a million.
Throughout the episode, Virginie shares her moving accounts of how FFI (or, in French, insomnie fatale familiale - IFF) has touched her life and those of her family members, offering listeners a glimpse into the emotional toll and challenges posed by living with such a rare condition.
Despite the obstacles in paving the way for medical advancements in FFI, Virginie's narrative is one of undiminished hope, unwavering determination, and relentless perseverance. She delves into the milestones and efforts her organisation has achieved since its inception a year ago, outlining her vision for the FFI community and imparting invaluable advice for anyone striving to make a difference in the realm of ultra-rare diseases.
Contact the podcast by emailing RareOnAir@eurordis.org, and join the conversation on social media using the hashtag #EurordisRareOnAir.
Also, do not forget to register for our 12th European Conference on Rare Diseases and Orphan Products (ECRD 2024), taking place online on 15-16 May 2024! Get your tickets now at: https://www.rare-diseases.eu/
Vous pourriez aimer
