• Our Mission is Personal with Sarah Glass

  • Apr 2 2025
  • Duración: 42 m
  • Podcast

Our Mission is Personal with Sarah Glass

  • Resumen

  • 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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