Emily Cox

Patient Advocate ALS

Biotech professional with over 12 years of experience across neuroscience, oncology, cell and gene therapy, and rare disease. My work has always been driven by what happens at the end of the pipeline, the patients waiting for therapies to reach them.

That commitment is personal. I’m a C9orf72 familial ALS gene carrier who has lost three family members to this disease. It has shaped everything about how I approach this industry.

I currently sit on the Patient Advisory Councils for the HEALEY ALS Platform Trial at Massachusetts General Hospital and Target ALS, where I advise on patient recruitment strategy, engagement, retention, and protocol design alongside leading ALS researchers. I’m also a research participant in the ALL ALS PREVENT study and an advocate for families navigating hereditary disease and reproductive options like IVF with PGT-M.

Across my commercial career I’ve built long-term relationships with researchers, clinicians, and institutions, and I’ve learned that trust is the only thing that sustains a partnership. I bring that same approach to every patient and advocacy engagement I’m part of, with a focus on making sure the right people get access to the right therapies, regardless of where they live or who they know.

Speaker Sessions

The Patient Voice