SCN2A Insights

SCN2A Australia
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SCN2A Insights

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.

  1. 20/02/2022

    Transition

    Transitioning children with complex health needs such as those with SCN2A or other developmental epileptic encephalopathies is challenging.  Dr Danielle Andrade from University of Toronto has been instrumental in producing a number of guides to the transition process and her ongoing research hopes to help further improve the process of transition.

    22 min

  2. 29/01/2022

    Living With Epilepsy

    Torie Robinson's lived experience makes her a powerful advocate for improving care for those with epilepsy.

    35 min
  3. Quality of Life Measures

    27/03/2021

    Quality of Life Measures

    Measuring quality of life is important, particularly in clinical trials, to capture the broader impacts of treatment beyond just measuring seizures.

    16 min
  4. Ciitizen

    09/03/2021

    Ciitizen

    Ciitizen is partnering with the SCN2A community and rare disease groups to empower patients and families with access to their health data and advance research.

    15 min
  5. Sleep in Autism

    22/08/2020

    Sleep in Autism

    Children, adolescents and adults with autism can have significant sleep problems. Trouble getting to sleep, waking at night and early morning waking are some of the most common. Prof Amanda Richdale, from LaTrobe University talks with us about why sleep problems occur in autism.

    14 min
  6. Simons Searchlight

    17/07/2020

    Simons Searchlight

    Simons Searchlight is an initiative of the Simons Foundation Autism Research Initiative (SFARI) that aims to better understand genetic neurodevelopmental conditions, specifically those associated with autism spectrum disorder (ASD). To better understand the work and current research of Simons Searchlight we speak to Jennifer Tjernagel, senior project manager.

    22 min
  7. SFARI

    17/07/2020

    SFARI

    Launched in 2006, SFARI is a scientific initiative within the Simons Foundation's suite of programs. SFARI’s mission is to improve the understanding, diagnosis and treatment of autism spectrum disorders by funding innovative research of the highest quality and relevance.To better understand the work and current research of SFARI we speak to Dr John Spiro, Deputy Scientific Director of SFARI.

    25 min
  8. Angel Aid

    13/07/2020

    Angel Aid

    Angel Aid provides relief for mothers of children with rare disorders, helping them learn tools of self-care, and be listened to without judgement.

    26 min
Tout afficher (28)

Bande-annonce

À propos

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.

Informations

  • Création
    SCN2A Australia
  • Années d’activité
    2019 - 2022
  • Épisodes
    28
  • Classification
    Tous publics
  • Copyright
    © 2024 SCN2A Australia
  • Site web de l’émission
    SCN2A Insights

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