Romina Ortiz completed her bachelor’s degree in Neuroscience and master’s degree in Molecular Microbiology and Immunology at Johns Hopkins University. She is a co-founder of Rare Genomics Institute (RG), COO and VP of Patient Advocacy at RG. In 2016 she was awarded the Patient Advocacy Leadership award by Sanofi Genzyme.
She has led small community health projects in Los Angeles and Baltimore on general medicine and tuberculosis screening and worked in laboratory research on Mitochondrial DNA mutations associated with Parkinson’s Disease, Genome-wide association studies on Asthma in global African populations and the development of a double knockout mouse model and immunotherapy for Small Cell Lung Cancer, among others.
At RG she directs the Patient Advocacy Team in next generation sequencing and research services to undiagnosed and rare disease patients. She has developed and maintained volunteer a training curriculum on Genetics, Genetic Sequencing, inherited disease and patient privacy, in the form of written materials eLearning modules. She successfully completed a training study funded by the John Templeton Foundation on crowdfunding best practices to support clinical sequencing projects and currently directs a philanthropic program with Illumina called iHope, offering free whole genome sequencing to undiagnosed children.
Her goal is to continue to work towards reducing inefficiency and fragmentation in medical research and health care by early disease identification and intervention, something that is a significant barrier especially in rare and undiagnosed diseases.