Let's TalKBG!

KBG Foundation
  • 4.5(2개의 평가)
  • 비영리
  • 매월 업데이트

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

에피소드

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

    2024. 07. 07.

    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.

    1시간 2분
  2. Let's TalKBG: BEOND Information Evening

    2023. 05. 04.

    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

    1시간 3분
  3. Let's TalKBG: Siblings 2023

    2023. 04. 11.

    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.

    14분
  4. Let's TalKBG: Siblings

    2022. 04. 10.

    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

    2022. 04. 10.

    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.

    28분

  6. 2022. 03. 27.

    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.

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

    2022. 03. 19.

    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.

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

    2022. 03. 12.

    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.

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

    2022. 03. 05.

    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

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

    2022. 02. 28.

    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.

    26분
  • 10개의 에피소드

평가 및 리뷰

4.5
최고 5점
2개의 평가

소개

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

정보

  • 제작진
    KBG Foundation
  • 방송 연도
    2023년 - 2024년
  • 에피소드
    10
  • 등급
    전체 연령 사용가
  • 저작권
    © KBG Foundation 2023
  • 웹사이트 보기
    Let's TalKBG!