“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 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.
On This Episode We Discuss:
- 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
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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.
Credits
Hosted by: Dr. Stan Crooke.
Videographer: Jon Magnuson of Mighty One Productions.
Producers: Colin Delaney, Kira Dineen, Jon Magnuson, Andrew Serrano and Amy Williford.
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We cannot do
this alone
Together we are changing the world—
one patient at a time
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.
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