Episode 2 of the Brain Health Matters Podcast is available now!
This episode is entitled ‘1 in a Million’ and focuses on rare neurological conditions.
Did you know that there are over 400 different neurological conditions? The vast majority of these conditions are extremely rare, making them difficult to diagnose and treat. From a lack of available specialists, to fragmented care pathways, there are too many gaps in healthcare systems for people living with a rare neurological disease to fall through.
In this episode of Brain Health Matters, we’ll hear from three people across Europe living with different rare neurological conditions- Leda Bresnov, from Denmark, who lives with neuromyelitis optica spectrum disorder (NMOSD), Jan Bodenbach, from Germany, who has generalised dystonia, and Eva Frostell, from Finland, who lives with myasthenia gravis (MG).
We’ll also hear from neurologist Silvia Rossi, and from Astri Arnesen, EFNA President, who will tell us what organisations like EFNA, along with policy-makers, are doing to counter the challenges faced by the rare disease community.
We’ll have further episodes of the Brain Health Matters podcast and associated blog posts in our Patient Perspective on Brain Health series in 2024.
The Brain Health Matters podcast is written and produced by Elizabeth Cunningham on behalf of the European Federation of Neurological Associations, with support from Roche, Novartis, Merck, Alexion and Horizon Therapeutics.