Part 2: Developing Retinal organoids

I got a chance to share my progress on developing retinal organoids on Rare Disease Day at UCSF on February 6, 2024. The entire day was filled with amazing scientists, entrepreneurs, and folks working at nonprofits to help connect patients with treatments. I got to talk about my personal patient journey in developing a model for my rare disease, which is an intronic mutation in the EYS genome.

I chose to talk about my personal experience around finding a grant and seeking opportunities to model my disease, demonstrating that we are able to grow retinal organoids with late-onset retinitis pigmentosa, and extending the patient journey in finding a treatment and balancing day-to-day care. Below is the link to the talk and my talk starts at 54 minutes.