Sharing Hope Through Storytelling & Connection with Shanna Tolbert

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