A rare intestinal disease characterized by potentially life-threatening inflammatory bowel necrosis predominantly affecting preterm neonates. Patients may present with feeding intolerance lethargy temperature instability abdominal distention blood-stained stools diarrhea bilious vomiting apnea and signs of sepsis. Radiographic features include pneumatosis intestinalis portal venous gas presence of fixed dilated intestinal loops bowel wall edema and (in case of bowel perforation) pneumoperitoneum.
Data from Orphanet are used to provide information on a disease's name, synonym(s), and overview. Reference: Access aggregated data from Orphanet at Orphadata. Orphadata: Free access data from Orphanet. © INSERM 1999. Available on http://www.orphadata.org. Data version August 2026
Newly diagnosed with
Necrotizing enterocolitis?
Our RARE Concierge Services Guides are available to assist you by providing information, resources and connections as you navigate your rare disease journey.
Advocacy Organizations
NEC Society
The NEC Society brings together families, clinicians, and scientists to advance research, education, and advocacy for a world without necrotizing enterocolitis (NEC) - a devastating intestinal disease that affects medically fragile infants in their first weeks and months of life.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.