My Nonprofit Reviews

As a patient advocate at Rare Genomics, we help to connect adolescent patients to partner CLIA certified laboratories for whole-genome sequencing and analyses. The goal of this international non-profit is to integrate phenotypic medical information with genomic data to identify a diagnosis and find appropriate treatment options. It is imperative that these children receive sequencing because they are consistently denied coverage for prescribed medical therapies and equipment due to the lack of a formal diagnosis. The parents of these patients typically come to us as a last resort and to be able to help these families has been a truly rewarding experience.