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 October 2024
Newly diagnosed with
Necrotizing enterocolitis?
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Advocacy Organizations
Care-for-Rare America Inc
To establish a global alliance in order to identify the genetic causes of rare diseases and develop effective treatments, following a three-stage approach: recognize, understand, cure.
Help Hope Live
Help Hope Live supports community-based fundraising for people with unmet medical expenses and related costs due to cell and organ transplants or catastrophic injuries and illnesses. These efforts play a critical role in helping clients access the care and equipment they need to heal, live, and thrive. Unlock a powerful and safe way to raise funds for medical needs with Help Hope Live. They provide one-on-one fundraising guidance, a customizable Campaign Page, bill pay support, and additional benefits based on their 501(c)(3) nonprofit status.
NEC Society
The NEC Society is the world's leading NEC-focused nonprofit. We were founded by a bereaved mother and now bring together clinicians, patient-families, and researchers to advance NEC research, education, and advocacy. Together, we are working tirelessly to build a world without necrotizing enterocolitis.
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Clinical Trials
For a list of clinical trials in this disease area, please click here.