Early-stage biotech companies are sharpening a new tool in their drug development workbench: patient advocacy.
Startups are tapping patients and patient groups to raise awareness of diseases, bankroll research, design clinical trials, and tell their stories to the regulators who decide which experimental medicines come to market.
“No one can doubt the power of the patient,” said Annie Ganot, the mother of a 6-year-old boy with Duchenne muscular dystrophy and head of patient advocacy at Solid Biosciences LLC, a Cambridge biotech developing a gene therapy treatment for the muscle-wasting disease. “The science should not be dictated by patients, but the patients’ voice should be heard.”
