Sharing Hope Through Storytelling & Connection with Shanna Tolbert

from Patient Empowerment Program: A Rare Disease Podcast

What's one way to spread hope? By sharing your experiences and connecting with others who truly understand the everyday challenges nano-rare patients face. Shanna Tolbert was one of five nano-rare patient caregivers who participated in the panel, The Perilous Journey to Diagnosis and Treatment for Nano-rare Disease Patients. Listen to Shanna’s take on the importance of dialogue and relive a few patient stories as told by the parents who participated in this panel. On this episode, we discuss: 0:56 The importance of hope 3:38 Meeting other nano-rare caregivers and staying connected 6:48 The Nano-rare Patient Colloquium is intimate 12:41 Patients in attendance are one of the joys of the NRPC 16:35 Patient Journey - Connor 20:55 Patient Journey - Mostyn 25:27 Patient Journey - Lena 32:32 Patient Journey - Ireland 39:29 Comments from patient father, Luke Rosen Video: Susannah's Story: Treated with an ASO

What this episode covers

What's one way to spread hope? By sharing your experiences and connecting with others who truly understand the everyday challenges nano-rare patients face. Shanna Tolbert was one of five nano-rare patient caregivers who participated in the panel, The Perilous Journey to Diagnosis and Treatment for Nano-rare Disease Patients. Listen to Shanna’s take on the importance of dialogue and relive a few patient stories as told by the parents who participated in this panel.On this episode, we discuss:0:56 The importance of hope3:38 Meeting other nano-rare caregivers and staying connected6:48 The Nano-rare Patient Colloquium is intimate 12:41 Patients in attendance are one of the joys of the NRPC16:35 Patient Journey - Connor20:55 Patient Journey - Mostyn25:27 Patient Journey - Lena32:32 Patient Journey - Ireland39:29 Comments from patient father, Luke RosenVideo: Susannah's Story: Treated with an ASO

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Sharing Hope Through Storytelling & Connection with Shanna Tolbert

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This episode is 43 minutes long.

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This episode was published on March 6, 2024.

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