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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