FOUNDER, OBSERVER, & RARE CANCER PATIENT (+ ADVOCATE)

The probability of my 2 rare cancers estimated 1 in 10 billion. Genetic understanding of (my) Erdheim Chester disease is critical to align treatment options. As a patient advocate there is a need for speed in medical decision making. As a professor in medical and health research I understand the appeal of wanting access to the latest genomic technologies and guide treatment options. In my experience the genomic and interfaced clinical landscape is fragmented, expensive and requires access to a bioinformatics specialist group for analysis of complex genetic mutations. My aims to improve the patient journey via better information and a networked system.