“We are changing the landscape of rare disease drug discovery and development – starting with the most rare.” – Sarah Glass, Ph.D.

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.

✔️ 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

Dr. Sarah Glass is the chief operating officer of n-Lorem Foundation. Sarah received her Ph.D. in Molecular Genetics at Ohio State University where she trained in rare inherited cancer syndromes. She has over 20 years of experience in clinical development and research across academia, pharmaceutical companies, and CROs. Sarah brings significant strengths and experience as an accomplished research geneticist, rare disease drug developer, and clinical trialist. She is acclaimed for forging key strategic partnerships across rare disease sectors and has driven efficiencies to decrease patient/caregiver burden in clinical research. Most notably, Sarah combines her professional expertise and training with the perspective of a parent of a child with a nano-rare disease. This allows Sarah to not only personally understand the challenges faced by n-Lorem patients and their families, but also to translate this understanding into n-Lorem’s paradigm shifting platform solution for the nano-rare community. Outside of n-Lorem, Sarah volunteers as chair of the DYRK1A Medical and Scientific advisory board and is engaged in many rare disease organizations to ensure collaboration in reaching common goals.

We cannot do
this alone

We hope that you join us on this journey to discover, develop and provide individualized antisense medicines for free for life for nano-rare patients. The ultimate personalized medicine approach – for free, for life.