Building a
world without
necrotizing enterocolitis

We are the world’s leading non-profit dedicated to necrotizing enterocolitis (NEC).

Remy

Research, Education, Advocacy

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, education, and advocacy. 

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Infants in the US develop NEC each year
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Mortality rate in most severe cases of NEC
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NEC Society initiatives to prevent NEC
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A Collective Voice for NEC Awareness

“Losing my son, Micah, to NEC has compelled our family to give and do all we can to prevent this devastating disease. Together, with your support, we can move mountains.”

Jennifer Canvasser, Founder & Executive Director 

Jennifer Canvasser with Micah 
Headshot of Ravi Mangal Patel, MD, MSc

“We urgently need better strategies to prevent and treat NEC. At the NEC Society, patient-families work alongside researchers and clinicians, which inspires our broader community to collaborate. The NEC Society is pivotal to progress.”

Ravi Mangal Patel, MD, MSc 

Turning pain into power through storytelling

Discover the powerful stories of families affected by necrotizing enterocolitis (NEC), a devastating and life-threatening disease. These stories highlight the urgent need for a world free from NEC. We are deeply grateful for the bravery of the families who have battled NEC and courageously shared their journeys with us. By opening their hearts to convey their grief, love, and hope, they help us confront the harsh reality of this disease. Their experiences inspire a shared vision for a future without NEC, honoring the strength and resilience of every child and family touched by this challenge.

Jenn and Leslie with the book and a picture of Micah
Forever Our Little One is a storybook for families to read together after the devastating ...
tree of courage painting
My grandson Micah developed necrotizing enterocolitis (NEC) when he was nearly six weeks old, after ...
Ditya and Pabita
A mother’s journey through her daughter Ditya’s premature birth, NICU struggles, and the devastating impact ...

NEC stands for necrotizing enterocolitis (nek-roh-tie-zing en-ter-oh-coh-lie-tis).

Necrotizing enterocolitis (NEC) is a devastating intestinal disease that primarily affects premature infants. NEC can also affect term babies, especially infants with a medical condition, like a congenital heart defect.

NEC causes severe inflammation of the intestine, leading to a bacterial infection causing necrosis (tissue death).

Looking for more resources? Learn more about NEC.

Committed to connecting families, clinicians, and scientists

We are here to provide resources to families and clinicians alike, to advance NEC research and understanding, and to ensure the patient-family voice is elevated in the NICU. We are here to build a world without NEC. 

Understanding more about NEC will empower you to advocate for your baby and make well-informed decisions.

Accelerating research and amplifying the patient-family voice.

Committed to advancing NEC research, education, and advocacy.

Not sure where to start? Reach out, we can help.

The Latest Updates on our Progress

Stay informed with the most recent developments, milestones, and achievements as we continue making strides together.

Dr. Hackam holding a baby in the hospital
“They don’t just suffer, they too often suffer alone.” Written by David J. Hackam, MD, ...
Staff grouped together holding NEC Society sign
The NEC Symposium brought together 200 participants from 9 countries and 35 US states to ...
Dr. Allison Rose
The NEC Society is mourning the tragic loss of Dr. Allison Rose, who cared for ...

Together, with our world-class partners, we're committed to preventing NEC