Our Mission is Personal with Sarah Glass
Patient Empowerment Program: A Rare Disease Podcast
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Show Notes
For n-Lorem’s Chief Operating Officer, Sarah Glass, the mission of n-Lorem is personal. Her son Ethan was diagnosed with a nano-rare mutation. A geneticist by training, she joined n-Lorem to oversee and direct the organization’s efforts to provide hope and potential help to those who need it most. It's more than just a job for her; she's powered by her son and the entire nano-rare community.
1:20 Sarah’s background, early life, and scientific interests
7:20 Thinking about the patient experience while at a Contract Research Organization
8:43 Rare disease trails are relatively new
10:54 Sarah’s son, Ethan, is a nano-rare patient
16:15 How long it took for Ethan to receive a diagnosis
21:35 Ethan's diagnosis and symptoms
25:55 How Sarah heard about n-Lorem
29:30 How does one come to terms with caring for a nano-rare child; How do parents continue looking for opportunities of hope when they may feel hopeless
32:58 What Sarah has learned while at n-Lorem
36:48 The biggest surprises Sarah has encountered during her journey at n-Lorem