Who We Are

The NEC Society is a 501(c)(3) nonprofit organization dedicated to building a world without necrotizing enterocolitis (NEC) through research, advocacy, and education. The NEC Society is a patient-led organization that collaborates with expert clinicians and researchers to better understand, prevent, and treat this devastating neonatal intestinal disease. The NEC Society’s work combines the patient-family perspective with solutions based on the best available scientific evidence.

The NEC Society was launched in January of 2014 by Jennifer Canvasser after her son died from complications of NEC just before his first birthday. Today, patient-families and experts from around the world work together to improve outcomes for the most vulnerable infants at risk of NEC.

The NEC Society intentionally elevates the voices of women, individuals from diverse backgrounds, the LGBTQ+ community, people with disabilities, and marginalized groups, as they bring critical insight and advance the NEC Society’s vision of a world without NEC. The NEC Society’s Inclusivity Policy is available here.

What We Do

NEC (necrotizing enterocolitis) is a leading cause of infant death, impacting thousands of babies every year. It is a devastating intestinal disease that primarily affects babies born prematurely or with a medical complication. Learn more about NEC here. Our vision is to build a world without NEC and we do this by accelerating research, advocacy, and education.