Turning Pain
into Power through Research, Education, and Advocacy
Ronan
This report is also available as a printable PDF.
In the US, one baby dies from NEC every day
NEC moves aggressively and leads to severe inflammation. Upon diagnosis, many babies have only hours or days before their intestines become necrotic, progressing to sepsis, multi-system organ failure, and death.
Each year, more than 3,500 infants in the US develop NEC. Right now, there is no cure for this disease. In the most severe cases, the mortality rate reaches 50-100%. Infants who survive NEC often struggle with lifelong digestive, nutritional, motor, and cognitive complications.
Leyden
Our mission is to build a world without NEC
By advancing research, education, and advocacy to overcome the inadequate treatment and prevention options that have devastated our community for decades, we can prevent this devastating disease.
Founded by a bereaved mother, the NEC Society is filling a vital need by bringing together clinicians and scientists worldwide to accelerate NEC research, foster collaboration, and drive scientific breakthroughs.
Turning Pain into Progress
NEC causes at least 1 in 10 infant deaths in NICUs across the United States. To prevent and treat NEC, we need more research to better understand how and why the disease occurs and more engagement to implement the most protective care practices.
The NEC Society gives our community the information and resources necessary to better prevent, diagnose, and treat NEC.
“Without my son, Cash Owen, physically in my arms, I parent him from afar by fundraising for the NEC Society, saying his name, and raising awareness about NEC.”
Shannan Finegan, NEC Society, Patient-Family Advisory Council
Turning Pain into Hope
The NEC Society’s work is driven by our intimate understanding of the devastation of NEC. Patient-families and clinician-scientists join our community because they are compelled to advance our mission. The NEC Society represents hope amid feelings of helplessness, and connection amid feelings of isolation.
We center babies and families in everything we do. Our work focuses on the urgent need to prevent this disease. Every day, more infants are diagnosed with NEC, and too many do not make it home to their families.
The NEC Society is a 501(c)(3) nonprofit organization that relies on donations from individuals and foundations. We have come so far. Yet, there is so much more that needs to be done. You can help protect infants from this devastating disease. Please join us by making a donation. Every dollar donated to the NEC Society is transformed into impactful work.
Advancing research to prevent NEC
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.
NEC Research Awards: Cultivates the next generation of scientists and clinicians focused on NEC.
Promoting education to better understand NEC
NEC Symposium: North America’s only international scientific conference on NEC. The NEC Society’s 2023 Symposium convened 200 diverse participants from 9 countries and 35 states, with 20 educational sessions presented by 60 renowned faculty members. The collaborations, research, and advocacy stemming from the 2023 NEC Symposium will reverberate in the NICU community for years.
Planning is underway for the 2025 NEC Symposium taking place in Chicago, September 7 – 10, 2025.
Resources for Families
The NEC Society provides free resource boxes to families newly diagnosed with NEC or who have tragically lost their child to this disease. Our resources empower families with information and comfort when they need it most.
The NEC Society’s website provides evidence-based, compassionate information about the disease for families. The website is a vital resource for families searching for information and community. NECsociety.org features families who share their stories in hopes of conveying lessons so others can learn from their experience and find comfort in knowing they’re not alone.
Ready To Make A Difference?
Your support transforms lives and strengthens our community. Join us in creating lasting change by contributing to a cause that matters.
