• Patient Journeys: Reliable comprehensive documents which summarise a Rare Disease

    This video features Dr. Petya Bogdanova-M and Dr. Mary Kearney discussing the critical role of patient journeys in understanding and managing rare neurological diseases. They highlight how these comprehensive documents, exemplified by DW's experience with POLR3A ataxia, visually map patient healthcare experiences. The presentation emphasizes the educational value of patient journeys for both patients and clinicians, particularly in Ireland where rare neurological diseases affect a significant population.

    Mary Kearney,Petya Bogdanova-Mihaylova Speaker: Mary Kearney,Petya Bogdanova-Mihaylova

    AdvancedLevel: Advanced

    2025Publication year: 2025

    Topics in this course:

    ERN RND ERN-RND Post-graduate curriculum ataxias ataxia Rare Diseases Patient Journeys Neurology Healthcare Medical Research