19 episodes

Listen to SCN2A Insights to keep up to date with the latest research in SCN2A, genetic epilepsy and rare genetic disorders. Hosted by Ms Kris Pierce, RARE Global Advocacy Leadership Council member, and Dr David Cunnington, parents of Will, who has SCN2A.

SCN2A Insights SCN2A Australia

    • Science
    • 5.0, 4 Ratings

Listen to SCN2A Insights to keep up to date with the latest research in SCN2A, genetic epilepsy and rare genetic disorders. Hosted by Ms Kris Pierce, RARE Global Advocacy Leadership Council member, and Dr David Cunnington, parents of Will, who has SCN2A.

    Supporting Children

    Supporting Children

    The global coronavirus pandemic has brought significant challenges for us all, but particularly for children with developmental and epileptic encephalopathies.

    • 16 min
    Strategies for Carers

    Strategies for Carers

    The global coronavirus pandemic has brought significant challenges particularly for those with children with developmental and epileptic encephalopathies.

    • 14 min
    COVID-19

    COVID-19

    Want to better understand better how the COVID-19 pandemic may impact children and adults with genetic epilepsy and developmental and epileptic encephalopathies (DEEs)? Listen to these tips and information from Prof Ingrid Scheffer. This bonus episode of SCN2A Insights is produced by Genetic Epilepsy Team Australia for the benefit of those with genetic epilepsy and DEEs and their families.

    • 9 min
    Global Genes

    Global Genes

    Global Genes connects, empowers and inspires the rare disease community. To learn more about Global Genes' mission and the support they can give organisations around the world we spoke to Kimberly Haugstad, CEO of Global Genes.

    • 16 min
    Family Stories

    Family Stories

    Having a child with SCN2A can have a significant impact on the whole family. To mark International SCN2A Awareness Day on February 24th we interviewed three parents about having a child with SCN2A.

    • 48 min
    Exploring Families' Needs

    Exploring Families' Needs

    Families can find it challenging dealing with the healthcare system when children with genetic epilepsy and developmental epileptic encephalopathies are unwell. To help identify needs and plan towards improving services, Genetic Epilepsy Team Australia convened a roundtable including families, clinicians and researchers. In this episode Kris Pierce discusses the outcomes of the roundtable and plans for the future.

    • 12 min

Customer Reviews

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4 Ratings

4 Ratings

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