Resources for NEC Survivors & their Families

Many babies recover from NEC without complications. Some babies recover but may experience long-term health and developmental issues. The NEC community is working to build more resources for families affected by this disease.

Read the results of our study of Long Term NEC Outcomes.

Watch the NEC Society’s Long Term Outcomes webinar.

View the video presentation Long-Term Outcomes and Life Impacts of necrotizing enterocolitis: Voices of Survivors & Parents from the Pediatric Academic Societies (PAS) meeting.

Join the NEC Society’s closed Facebook group for families affected by NEC, NEC Society Connects.

The Short Bowel Syndrome (SBS) website provides resources for individuals diagnosed with Short Bowel Syndrome.

The Short Gut Family Support Facebook page provides a venue for families to support each other.

Find information about pediatric intestinal transplant on Transplant Unwrapped.

Tiny Superheroes is an organization empowering extraordinary kids.

The Oley Foundation enriches the lives of those living with home intravenous nutrition (parenteral) and tube feeding (enteral). 

The Gutsy Perspective, a research project to capture the perspectives of those affected by short bowel syndrome (SBS) and intestinal failure (IF).

Coming soon: NEC Society research publication on Long-Term NEC Outcomes

Coming soon: NEC Registry- A collection of data about how NEC affects patients and their families. This data will enable researchers to study the long term consequences of NEC on survivors (as children and adults) and bereaved families. Anyone affected by this condition (or their caregivers) can contribute their information for use in research.

Coming soon: A 1-page NEC information sheet for long-term NEC survivors to take to healthcare appointments. The info sheet will help to help explain what NEC is and explain its various long-term consequences, to support discussions between patients and clinicians.


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