Patient Advocate and Scholar-Activist: Ligia Castro


I grew up in a family of researchers. My mother is an anthropology professor, and my father, an economics professor at the Federal University of Mato Grosso (Brazil), both work with communities, with emphasis on the rural population and health. So connecting to people and understanding its need to help them has been part of my life.

I’m a biologist who loves genetics. My Ph.D. and postdoctoral were focused on next-generation sequencing to identify mutations responsible for Genetic Syndromes related to DNA repair deficiencies, mainly Xeroderma pigmentosum (XP).


With a genetic diagnosis and the knowledge that comes with it, medicine has better possibilities to treat patients correctly. Information and prevention can improve the prognosis of the disease and give patients a better quality of life.

But it’s not only about it. It’s about people, their lives and all its complexity. My purpose is to connect patients’ lives complexity into research.


My work as a Patient Advocate and scholar-activist with I2L are focused on building a road, along with patients, families, scientists and physicians, to understand the needs of Xeroderma Pigmentosum patients better.