EPISODE · Apr 2, 2025 · 41 MIN
Our Mission is Personal with Sarah Glass
from Patient Empowerment Program: A Rare Disease Podcast
For n-Lorem's Chief Operating Officer, Sarah Glass, the mission of n-Lorem is deeply personal. Her son Ethan was diagnosed with a nano-rare mutation, a journey that has shaped her commitment to the cause. A geneticist by training, Sarah joined n-Lorem to help lead and guide the organization in its efforts to offer hope and potential help through treatment opportunities to nano-rare patients and their families. This is more than just a job for her—she is driven by her love for her son and a passion to serve the entire nano-rare community. This episode is proudly sponsored by Hongene Biotech. “We are changing the landscape of rare disease drug discovery and development – starting with the most rare.” – Sarah Glass, Ph.D. On This Episode We Discuss: ✔️ Sarah’s background in science and her early interests ✔️ How working at a Contract Research Organization (CRO) shaped her understanding of the patient experience ✔️ The challenges of rare disease clinical trials and why they are still relatively new ✔️ Sarah’s son, Ethan, and his journey as a nano-rare patient ✔️ How long it took for Ethan to receive a diagnosis and the symptoms he faces ✔️ How Sarah discovered n-Lorem, a nonprofit providing free, lifetime treatment for nano-rare patients ✔️ The emotional journey of caring for a nano-rare child—how parents navigate hope and uncertainty ✔️ What Sarah has learned while working at n-Lorem ✔️ The biggest surprises in her journey as both a mother and a scientist If you’re passionate about rare diseases, personalized medicine, and patient advocacy, this episode is a must-watch! 💙 🔔 Subscribe for more stories from the rare disease community! #RareDisease #NanoRare #nLorem #PatientAdvocacy #geneticdisorders Donate to n-Lorem: www.nlorem.org/donate More about Hongene: www.hongene.com
What this episode covers
For n-Lorem's Chief Operating Officer, Sarah Glass, the mission of n-Lorem is deeply personal. Her son Ethan was diagnosed with a nano-rare mutation, a journey that has shaped her commitment to the cause. A geneticist by training, Sarah joined n-Lorem to help lead and guide the organization in its efforts to offer hope and potential help through treatment opportunities to nano-rare patients and their families. This is more than just a job for her—she is driven by her love for her son and a passion to serve the entire nano-rare community. This episode is proudly sponsored by Hongene Biotech. “We are changing the landscape of rare disease drug discovery and development – starting with the most rare.” – Sarah Glass, Ph.D. On This Episode We Discuss: ✔️ Sarah’s background in science and her early interests ✔️ How working at a Contract Research Organization (CRO) shaped her understanding of the patient experience ✔️ The challenges of rare disease clinical trials and why they are still relatively new ✔️ Sarah’s son, Ethan, and his journey as a nano-rare patient ✔️ How long it took for Ethan to receive a diagnosis and the symptoms he faces ✔️ How Sarah discovered n-Lorem, a nonprofit providing free, lifetime treatment for nano-rare patients ✔️ The emotional journey of caring for a nano-rare child—how parents navigate hope and uncertainty ✔️ What Sarah has learned while working at n-Lorem ✔️ The biggest surprises in her journey as both a mother and a scientist If you’re passionate about rare diseases, personalized medicine, and patient advocacy, this episode is a must-watch! 💙 🔔 Subscribe for more stories from the rare disease community! #RareDisease #NanoRare #nLorem #PatientAdvocacy #geneticdisorders Donate to n-Lorem: www.nlorem.org/donate More about Hongene: www.hongene.com
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Our Mission is Personal with Sarah Glass
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