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
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