Simons Searchlight attended the 2022 RARE Patient Advocacy Summit organized by Global Genes in San Diego. The event celebrates the stories of the rare disease community. From researchers, caretakers, and advocates to industry experts, it was a meaningful experience for Simons Searchlight to connect with the greater rare disease community.

Amanda Tufano and Jane Hong presented a poster on “Addressing Social Determinants of Health in the Rare Genetic Community” that looked into the health care cost, healthcare discrimination, and sense of community from survey responders within the Simons Searchlight cohort. Right alongside the conference’s theme that every single rare disease story is important, the poster also sought to shine a light on the voices within our community.