Elevating Patient-Family Voices in Necrotizing Enterocolitis.

A diagnosis of necrotizing enterocolitis (NEC) often affects families for a lifetime. Given the profound burden of NEC, families are uniquely positioned to harness the power of their experience to advocate for and contribute to research. Clinicians and scientists can also collaborate with families affected by NEC to improve care as well as prevention and treatment strategies. Elevating the voices of patient-families affected by NEC can help advance the field by helping identify meaningful gaps in science, conveying the urgency of improving outcomes, and providing knowledge only known by families carrying the lifelong devastation of NEC.