• Wes Michael: Dedicated to Amplifying the Rare Patient Voice

  • 2024/09/25
  • 再生時間： 44 分
  • ポッドキャスト

Wes Michael: Dedicated to Amplifying the Rare Patient Voice

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  • We often hear the stories of patients and caregivers.

    Rare Patient Voice is well known for connecting family's stories with the researchers who need to hear them. The founder, Wes Michael, sat down with us to share the results of a caregiver survey they conducted in late 2023. The findings were interesting and affirmed much of what parents raising kiddos with rare diseases already know.

    So you may ask, "So what?" The importance of this first such survey is that it begins to quantify the range and depth of the impact of rare diseases on families. These data can now be used to make the case for new policy, for the need to provide for these families, and even to explain to outsiders what they are going through.


    Mentioned in this episode:

    Invitation to Check Out The Atlas

    The Atlas
    続きを読む 一部表示

あらすじ・解説

We often hear the stories of patients and caregivers.

Rare Patient Voice is well known for connecting family's stories with the researchers who need to hear them. The founder, Wes Michael, sat down with us to share the results of a caregiver survey they conducted in late 2023. The findings were interesting and affirmed much of what parents raising kiddos with rare diseases already know.

So you may ask, "So what?" The importance of this first such survey is that it begins to quantify the range and depth of the impact of rare diseases on families. These data can now be used to make the case for new policy, for the need to provide for these families, and even to explain to outsiders what they are going through.


Mentioned in this episode:

Invitation to Check Out The Atlas

The Atlas
続きを読む 一部表示

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