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Sharing Hope Through Storytelling & Connection with Shanna Tolbert 

n-Lorem Foundation
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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.
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
41:43 Susannah's Story: Treated with and ASO

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5 сен 2024

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Комментарии : 4   
@fawzikrossa3786
@fawzikrossa3786 6 месяцев назад
Any news about NARS 1 treatment ?
@nloremfoundation
@nloremfoundation 6 месяцев назад
Thank you for reaching out. n-Lorem works closely with each physician that submits an application. During the discovery and development process, n-Lorem will notify each physician on the status of their program. As such, we encourage patient families to reach out to their submitting physician for program updates.
@fawzikrossa3786
@fawzikrossa3786 6 месяцев назад
@@nloremfoundation thank you for the answer … what about patient families living outside usa ? We are based in France and im a physician and i wish i can submit an application I need your help
@nloremfoundation
@nloremfoundation 6 месяцев назад
​@@fawzikrossa3786 Thank you for your question. Patients must either live in the United States or have an identified research physician in the United States and have the ability to travel to the United States for treatment and evaluations per the treatment protocol. Please email info@nlorem.org to connect with an appropriate person at the foundation.
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