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Sharing Hope Through Storytelling & Connection with Shanna Tolbert
Manage episode 404975786 series 3349924
Контент предоставлен n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen). Весь контент подкастов, включая эпизоды, графику и описания подкастов, загружается и предоставляется непосредственно компанией n-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen), N-Lorem Foundation (Dr. Stan Crooke, Amy Williford, Kim Butler, Andrew Serrano, Jon Magnuson, and Kira Dineen) или ее партнером по платформе подкастов. Если вы считаете, что кто-то использует вашу работу, защищенную авторским правом, без вашего разрешения, вы можете выполнить процедуру, описанную здесь https://ru.player.fm/legal.
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
71 эпизодов
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