The NEC Society is a patient-led 501(C)(3) nonprofit organization that brings together diverse stakeholders to build a world without necrotizing enterocolitis (NEC). NEC is a devastating, complex disease that progresses rapidly and often blindsides families as well as clinicians.
NEC is a multifactorial condition without one specific cause. There are many risk factors for NEC. Scientists are still working to better understand why NEC occurs as well as how the disease can be better prevented and treated.
The NEC Society is not involved in the litigation around formula and NEC because we remain focused on our mission. Lawsuits are not a strategy used by the NEC Society towards our vision of a world without NEC.
Infants born prematurely are most at risk for developing NEC. NEC can develop in full-term babies, especially when there are health complications, such as congenital heart disease, but it is less common. For babies at risk of NEC, mother’s own milk provides the most protection against NEC. Unfortunately, there are situations that sometimes prevent a mother’s ability to provide milk to her baby in the NICU. This may include the mother’s health status or medical complications, physical separation from her newborn, and other factors. If mother’s own milk is not available, then pasteurized donor breast milk is the next safest option for infants at risk of NEC. However, donor milk is not available in every NICU nor always available to all babies in need. The NEC Society is actively working to increase equitable access to donor milk for all infants. Sometimes, formula is necessary and chosen by the baby’s care team as the best available plan of care. It is important to note that some infants still develop NEC even when they receive an exclusive human milk diet.
The NEC Society intimately understands the overwhelming heartache and trauma caused by this disease. Our organization is composed of patient-families, clinicians, researchers, and other diverse stakeholders compelled to prevent NEC and improve outcomes for NICU families. We believe the best way to build a world without NEC is to advance research, education, and advocacy. You can learn about the NEC Society’s work by visiting our accomplishments page, which highlights many of our most impactful projects since 2016. You can support and join the NEC Society’s efforts at NECsociety.org.