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 February 2026
Newly diagnosed with
Necrotizing enterocolitis?
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Advocacy Organizations
NEC Society
The NEC Society is the world’s leading nonprofit focused on necrotizing enterocolitis (NEC). We are led by patient-families, clinicians, and researchers to understand and prevent NEC so that babies and families never have to experience the devastation of NEC. Our mission is clear: to build a world without NEC through research, advocacy, and education.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.