Let's TalKBG!

KBG Foundation
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Welcome to TalKBG! Hosted by The KBG Foundation: the first patient-led organization for KBG Syndrome. Join us and our guests as we discuss topics on being newly diagnosed, common struggles, available services, IEPs and more! Let’s TalKBG! Follow us: KBG Foundation twitter.com/kbgfdn tiktok.com/@kbgfdn pinterest.com/KBGfdn youtube.com/KBGFoundation linkedin.com/company/kbgfdn

Épisodes

  1. Let's TalKBG: KBG Natural History Study with Matrix CEO Jason Colquitt

    07/07/2024

    Let's TalKBG: KBG Natural History Study with Matrix CEO Jason Colquitt

    In this episode learn more about the KBG Foundation Natural History Study with Across Healthcare CEO, Jason Colquitt, and KBG Foundation Chairman of the Board, Glenn Maughan. What makes the Matrix platform special and what features does it have in addition to The Study? #KBGRegistry #KBGNHS #KBGsyndrome #everylinkmatters #KBGfdn #AcrossHealthcare. To enroll in the study visit KBGFoundation.org.

    1 h 2 min
  2. Let's TalKBG: BEOND Information Evening

    04/05/2023

    Let's TalKBG: BEOND Information Evening

    On March 23, 2023 the KBG Foundation co-hosted the BEOND Study Information evening with the The Cerebra Network for Neurodevelopmental Disorders about the Behavioural and Emotional Outcomes in Neurodevelopmental Disorders (BEOND) study, which includes information about how people with KBG (or their parents) can be part of this study today. This is the recording of that event. You can find more information about this study on the KBG Foundation or The Cerebra Network websites. The video of this event is also available on our YouTube Channel at: https://youtu.be/yZ7Pj32DLV0 #KBGresearch #KBGsyndrome #everylinkmatters #KBGfdn #BEONDKBG

    1 h 3 min
  3. Let's TalKBG: Siblings 2023

    11/04/2023

    Let's TalKBG: Siblings 2023

    In this episode, KBG Foundation Secretary, Marla Slovin, interviews her son, Grant, about what it's like living with a KBG Sibling.

    14 min
  4. Let's TalKBG: Siblings

    10/04/2022

    Let's TalKBG: Siblings

    In this episode, KBG Foundation Secretary, Marla Slovin, interviews Taylor, Ava and Aiden Maughan about what it's like living with a KBG Sibling. View this episode on YouTube.

  5. Let's TalKBG: Siblings

    10/04/2022

    Let's TalKBG: Siblings

    In this episode, KBG Foundation Secretary, Marla Slovin, interviews Taylor, Ava and Aiden Maughan about what it's like living with a KBG Sibling. View this episode on YouTube.

    28 min

  6. 27/03/2022

    Let's TalKBG: 8 Tips to Help You Take Charge of Your Diagnosis

    KBG Foundation Secretary, Marla Slovin, and CEO, Annette Maughan present eight (8) rational tips to help you take charge of your diagnosis. Print version available online.

    21 min
  7. TalKBG: ANKRD11 in 11 - Seizures in KBG Syndrome

    19/03/2022

    TalKBG: ANKRD11 in 11 - Seizures in KBG Syndrome

    In 11 minutes, Annette Maughan, KBG Foundation CEO, discusses what types of seizures may present in KBG Syndrome and their incidence rate.

    12 min
  8. Let's TalKBG Episode 3: Living with KBG

    12/03/2022

    Let's TalKBG Episode 3: Living with KBG

    Marla and Annette discuss what it's like getting the diagnosis and adapting to having a name for all the symptoms.

    31 min
  9. TalKBG: ANKRD11 in 11 - Rare Disease Day

    05/03/2022

    TalKBG: ANKRD11 in 11 - Rare Disease Day

    In 11 minutes, Annette Maughan, KBG Foundation CEO, discusses the Rare Disease Day infographics, the data behind them and elephants. The Graphics can be found: KBG Syndrome Population KBG Syndrome Common Traits KBG Key Facts And The Behavior in KBG Syndrome Information Brochure

    11 min
  10. Let's TalKBG Episode 1: Introductions

    28/02/2022

    Let's TalKBG Episode 1: Introductions

    KBG Foundation Secretary, Marla Slovin and CEO/Executive Director, Annette Maughan discuss when their boys were diagnosed, how they met and how the Foundation started.

    26 min
  • 10 épisodes

Notes et avis

4,5
sur 5
2 notes

À propos

Welcome to TalKBG! Hosted by The KBG Foundation: the first patient-led organization for KBG Syndrome. Join us and our guests as we discuss topics on being newly diagnosed, common struggles, available services, IEPs and more! Let’s TalKBG! Follow us: KBG Foundation twitter.com/kbgfdn tiktok.com/@kbgfdn pinterest.com/KBGfdn youtube.com/KBGFoundation linkedin.com/company/kbgfdn

Informations

  • Création
    KBG Foundation
  • Années d’activité
    2023 - 2024
  • Épisodes
    10
  • Classification
    Tous publics
  • Copyright
    © KBG Foundation 2023
  • Site web de l’émission
    Let's TalKBG!