Headshot of Sophia Zilber with green polkadots in the background

Sophia Zilber Volunteer

Director, Patient Registries & Patient Data Standards


Sophia has over 20 years of experience with drug development, including clinical data analysis, and managing statistical programming teams to ensure successful delivery of clinical study analysis requirements. After losing her newborn daughter, Miriam, to a rare disease, Leigh syndrome in 2017, Sophia volunteered her time and experience to help the rare disease community. Sophia has been involved in multiple efforts with the goal of raising awareness in the mitochondrial disease community and general rare disease community regarding patient registries and what is involved with collecting high quality data that can be used for research. Sophia is proud to be a board member and a patient registry director for Cure Mito Foundation, where she is leading a global Leigh syndrome patient registry.

On The Web

Sofia's website: