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Jess Hess

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MSc, GC, CPC

Associate Director of Patient Advocacy & Engagement

Jess Hess, MSc, GC, CPC, is Associate Director of Patient Advocacy & Engagement at GeneDx. With expertise in genetic counseling and patient advocacy, Jess works to help patients and families navigate the genetic testing journey and access the information, resources, and support they need to make informed healthcare decisions.

Insights from

Jess Hess

Rapid Genome Sequencing
NICU
Newborn
Rare Disease Diagnostics
Cayden’s story: How rapid genome sequencing in the NICU helped his family act early

When unexpected findings during pregnancy led to a NICU stay, rapid genome sequencing gave Cayden’s family an answer within days. His diagnosis helped them begin specialist care, early intervention, and care planning without a prolonged diagnostic journey.

Genome
Genomics
FRRS1L
Everly’s story: How genome sequencing led to an FRRS1L diagnosis

Genome sequencing gave Everly’s family an answer after earlier testing did not. Her FRRS1L disease diagnosis brought clarity—and sparked a mission to help future children receive answers earlier and advance a potential treatment for this ultra-rare condition.

Developmental
Epilepsy
Exome
Rare Disease Diagnostics
Mora’s story: How an early SYNGAP1 diagnosis changed her care

When Mora began missing developmental milestones, her parents trusted their instincts and continued searching for answers. Exome sequencing identified SYNGAP1-related disorder, helping her family and care team proactively monitor for seizures and access earlier interventions and specialized care.