Necrotizing enterocolitis (NEC) is a devastating intestinal disease that primarily affects premature infants. NEC can also affect term babies, especially infantsGrace Rose 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).
NEC is a leading cause of death in neonatal intensive care units (NICUs) and is the most common and deadly gastrointestinal disease affecting premature and medically fragile infants.
Approximately 3,500 infants in the US develop NEC each year. The mortality rate is 100% in most severe cases. Infants that survive NEC often struggle with life-long complications such as short-bowel syndrome.
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.
The NEC Society is the world’s leading nonprofit organization focused on necrotizing enterocolitis (NEC). Our mission is clear: to build a world without NEC by advancing research, education, and advocacy. We are led by a global community of patient-families, clinicians, and scientists. Together, we are improving the understanding, prevention, and treatment of NEC and transforming what is possible for infants and families.
The NEC Society was launched in January of 2014 by Jennifer Canvasser after her son, Micah, died from complications of NEC just before his first birthday. Today, patient-families and experts from around the world work together to improve outcomes for the most vulnerable infants at risk of NEC.
We have come so far. Yet, there is so much more that needs to be done. We are working tirelessly to better understand and build a world without this devastating disease.
The NEC Society relies on donations from individuals and foundations. You can help protect infants from this devastating disease. Every dollar donated to the NEC Society is transformed into impactful work.
Advancing Research
NEC Biorepository: Includes 8 research centers across the United States that collect NEC-related human tissue samples. In this groundbreaking collaboration, centers are sharing these hard-to-acquire samples, accelerating the pace of NEC research.
NEC Research Incubator: Advances science through knowledge sharing, collaboration, and research funding. The Incubator cultivates the next generation of scientists and clinicians focused on NEC.
Education
NEC Symposium: The NEC Symposium is the world’s largest conference focused on necrotizing enterocolitis (NEC). The Symposium propels science by presenting a transformative learning experience for renowned leaders, bedside clinicians, researchers, and trainees. Participants benefit from dynamic opportunities to dive into basic science and innovation, focused on how clinicians and scientists can improve the prevention, diagnosis, and treatment of NEC.
NEC Research Awards: Cultivates the next generation of scientists and clinicians focused on NEC.
Resources for Families
Families affected by necrotizing enterocolits (NEC) often experience feelings of isolation, along with a lack of resources and information about the disease. Many of us at the NEC Society have been impacted by NEC, and we have created Family Resource Boxes to provide the information we wish we would have had at the time.
Bereaved Family Resource Box: Families experiencing the devastation of losing a child to NEC often feel alone in their grief. Our Bereaved Family Resource Box was developed by bereaved families, and provides the information we wish we would have had when we lost our child.The box supports families in the knowledge that they will always be their baby’s parent, and that their precious child will always be part of their life. Tree of Courage note cards and plantable seed paper, to plant in memory of their child, are also included.
Newly Diagnosed Resource Box: When families receive a NEC diagnosis, it can be an isolating and confusing time. Our resource box lets families know that they are not alone and provides them with clear and accurate information about necrotizing enterocolitis and what to expect.Materials in the box empower families in their role as the most important members of their baby’s care team. Our signature Tree of Courage note cards and an inspirational book to read with their baby are also included.
FEATURED STORIES
10 Things for Bereaved Parents to Know
The Necrotizing Enterocolitis (NEC) Society brings together patient-families, clinicians, researchers, and other stakeholders to advance research, education, and advocacy. Our vision is a world without NEC.
NEC disproportionately affects Black and Hispanic infants and families with substantially higher rates of both NEC incidence and mortality. Yet, there has been little effort to date focused on equity and representation within NEC research. Our team is eager to transform this unacceptable reality. Five team leads on this project are core members of the NEC Society and are committed to advancing the NEC Society’s Inclusivity Policy. The NEC Society deliberately prioritizes diversity by constantly striving to build an ever more inclusive community, internal and external of the organization. The NEC Society aims to ensure that all individuals and groups touched by NEC see themselves reflected within the organization and feel a strong sense of belonging. The NEC Society intentionally supports the empowerment of women, people from diverse backgrounds, the LGBTQIA+ community, people with disabilities, and groups that have been historically marginalized.
We recognize that it is not enough to simply value diversity and inclusion. The NEC Society is dedicated to transforming our values into actions. One specific strategy includes strategically expanding the NEC Society’s 12-seat Patient & Family Advisory Council (PFAC) and reserving seats for distinct life experiences and attributes. For example, our PFAC has seats reserved for bereaved families, adult survivors of NEC, and Black patients/families, which helps to ensure we are best positioned to serve our community. Our PFAC is critical to the organization’s work and will provide feedback and guidance throughout the duration of this project from a patient and family perspective through an equity lens.
Organization name
NEC Society
other names
Necrotizing Enterocolitis Society
2014
Tax id (EIN)
46-4426455
Mission Category
Health Care
Operating Budget
$250,001-$500,000
Organization Need
Funding: Unrestricted, Funding: Program, Funding: Other
Demographics Served
Youth & Children
Local Counties Served
El Dorado, Placer, Sacramento, Yolo
Address
140 B Street, Ste 5, #128US