Let’s Turn Pain Into Power

We center babies and families in everything we do. Our work focuses on the urgent need to prevent this disease.

Research, Advocacy, Education

The NEC Society is a 501(c)(3) nonprofit organization dedicated to building a world without necrotizing enterocolitis (NEC) through research, advocacy, and education. The NEC Society brings together patient-families, clinicians, and other diverse stakeholders to better understand, prevent, and treat this devastating neonatal intestinal disease. Learn more about our organization.

Infants in the US develop NEC each year

Mortality rate in most severe cases of NEC

0 %

Babies enrolled in the NEC biorepository

NEC Society initiatives to prevent NEC

A Collective Voice for NEC Awareness

“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

“Losing 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

Family Stories of Love, Loss, and Hope

Discover the powerful stories of families impacted by necrotizing enterocolitis (NEC). Each journey shares moments of love, courage, and resilience as parents navigate the challenges of this life-threatening condition. These heartfelt experiences inspire a collective hope for a future without NEC, honoring each child and family’s journey.

Love You Forever, Ditya

A mother’s journey through her daughter Ditya’s premature birth, NICU struggles, and the devastating impact of necrotizing enterocolitis (NEC), a life-threatening condition. Despite brief moments ...

Matilda’s Story

Matilda was born prematurely at 33 weeks alongside her identical twin sister, Charlotte, and initially spent two nights in the NICU. Despite early signs of ...

Learning to Live after Losing Leyden

After losing her daughter Leyden to NEC, a mother reflects on the heartbreak and the unanswered questions, emphasizing the need for awareness and understanding of ...

What is NEC?

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

Inflammation or infection in the intestines leads to bacterial buildup and tissue death.

The result in sepsis or death if waste and bacteria leak into the abdomen and bloodstream.

Prompt treatment is essential for saving the infant’s life.

Looking for more resources? Learn more about NEC.

Connect with the NEC Society

Empower, Advocate, and Advance: Join the NEC Society for Research and Resources.

For Families

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

For Clinicians

Accelerating research and amplifying the patient-family voice.

For Scientists

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.

Education

How to Optimize the Use of Mother’s Own Milk in the NICU

In the NICU, mother’s breast milk is medicine for very premature infants. Mother’s breast milk has a multitude of nutritional and immune properties that protect ...

Education, Symposium

2023 NEC Symposium

The NEC Symposium brought together 200 participants from 9 countries and 35 US states to advance research and quality care. Together, we are building a ...