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Disease Profile

Necrotizing enterocolitis

Prevalence estimates on Rare Medical Network websites are calculated based on data available from numerous sources, including US and European government statistics, the NIH, Orphanet, and published epidemiologic studies. Rare disease population data is recognized to be highly variable, and based on a wide variety of source data and methodologies, so the prevalence data on this site should be assumed to be estimated and cannot be considered to be absolutely correct.

1-5 / 10 000

US Estimated

Europe Estimated

Age of onset





Autosomal dominant A pathogenic variant in only one gene copy in each cell is sufficient to cause an autosomal dominant disease.


Autosomal recessive Pathogenic variants in both copies of each gene of the chromosome are needed to cause an autosomal recessive disease and observe the mutant phenotype.


dominant X-linked dominant inheritance, sometimes referred to as X-linked dominance, is a mode of genetic inheritance by which a dominant gene is carried on the X chromosome.


recessive Pathogenic variants in both copies of a gene on the X chromosome cause an X-linked recessive disorder.


Mitochondrial or multigenic Mitochondrial genetic disorders can be caused by changes (mutations) in either the mitochondrial DNA or nuclear DNA that lead to dysfunction of the mitochondria and inadequate production of energy.


Multigenic or multifactor Inheritance involving many factors, of which at least one is genetic but none is of overwhelming importance, as in the causation of a disease by multiple genetic and environmental factors.


Not applicable


Other names (AKA)

Enterocolitis, necrotizing; NEC


Digestive Diseases


Necrotizing enterocolitis (NEC) is a condition characterized by variable injury or damage to the intestinal tract, causing death of intestinal tissue.[1][2] The condition most often occurs in premature newborns, but it may also occur in term or near-term babies.[2] Signs and symptoms may include abdominal distension, bloody stools, vomiting bile-stained fluid, and pneumatosis intestinalis (gas in the bowel wall) identified on abdominal x-ray. Affected infants occasionally have temperature instability, lethargy, or other findings of sepsis.[1][2] The exact cause of NEC is unknown. Treatment involves stopping feedings, passing a small tube into the stomach to relieve gas, and giving intravenous fluids and antibiotics.[1][3] Surgery may be needed if there is perforated or necrotic (dead) bowel tissue.[3] About 60-80% of affected newborns survive the condition.[1]


Support and advocacy groups can help you connect with other patients and families, and they can provide valuable services. Many develop patient-centered information and are the driving force behind research for better treatments and possible cures. They can direct you to research, resources, and services. Many organizations also have experts who serve as medical advisors or provide lists of doctors/clinics. Visit the group’s website or contact them to learn about the services they offer. Inclusion on this list is not an endorsement by GARD.

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    Organizations Providing General Support

      Learn more

      These resources provide more information about this condition or associated symptoms. The in-depth resources contain medical and scientific language that may be hard to understand. You may want to review these resources with a medical professional.

      Where to Start

        In-Depth Information

        • Medscape Reference provides information on this topic. You may need to register to view the medical textbook, but registration is free.
        • The Monarch Initiative brings together data about this condition from humans and other species to help physicians and biomedical researchers. Monarch’s tools are designed to make it easier to compare the signs and symptoms (phenotypes) of different diseases and discover common features. This initiative is a collaboration between several academic institutions across the world and is funded by the National Institutes of Health. Visit the website to explore the biology of this condition.
        • PubMed is a searchable database of medical literature and lists journal articles that discuss Necrotizing enterocolitis. Click on the link to view a sample search on this topic.


          1. Arthur E. Kopelman. Necrotizing Enterocolitis (NEC). Merck Manuals. February 2009; https://www.merckmanuals.com/home/childrens_health_issues/problems_in_newborns/necrotizing_enterocolitis_nec.html?qt=Necrotizing enterocolitis&alt=sh. Accessed 2/4/2013.
          2. Shelley C Springer. Necrotizing Enterocolitis. Medscape Reference. January 24, 2012; https://emedicine.medscape.com/article/977956-overview. Accessed 2/4/2013.
          3. Todd Eisner. Necrotizing enterocolitis. MedlinePlus. May 16, 2011; https://www.nlm.nih.gov/medlineplus/ency/article/001148.htm. Accessed 2/4/2013.
          4. Schanler RJ. Management of necrotizing enterocolitis in newborns. UpToDate. July, 2016; https://www.uptodate.com/contents/management-of-necrotizing-enterocolitis-in-newborns.
          5. Stanford A, Upperman JS, Boyle P, Schall L, Ojimba JI, Ford HR. Long-term follow-up of patients with necrotizing enterocolitis. J Pediatr Surg. July 2002; 37(7):1048-1050.
          6. Patel JC, Tepas JJ 3rd, Huffman SD, Evans JS. Neonatal necrotizing enterocolitis: the long-term perspective. Am Surg. June 1998; 64(6):575-579.