Frequently Asked Questions About NEC and the NEC Society
The NEC Society is the world’s leading non-profit dedicated to necrotizing enterocolitis (NEC).
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Frequently Asked Questions
At the NEC Society, we understand how overwhelming it can be to navigate the complexities of necrotizing enterocolitis (NEC). Whether you’re a parent, healthcare provider, or advocate, our goal is to provide you with reliable information and resources to better understand and address this devastating disease.
About Necrotizing Enterocolitis
What is NEC?
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 bacterial infection and necrosis (tissue death).
NEC is often a life-changing diagnosis for babies and families. Although some babies fully recover from NEC, many of the infants who survive have lifelong complications. Tragically, NEC is a leading cause of death in neonatal intensive care units (NICUs).
Cardiac NEC
Babies with certain medical conditions, such as congenital heart defects (CHD), are at a higher risk of developing NEC, even when they are born at term.
Human Milk and NEC
Mother’s own milk provides the most protection against necrotizing enterocolitis. When mother’s own milk is not available, pasteurized donor human milk is the next safest option. Formula does not provide any protection against NEC.
Learn about human milk and NEC here.
Probiotics and NEC
The current prevention and treatment options for NEC are inadequate and failing our community. Although more research is urgently needed to fully understand and eliminate NEC, current evidence demonstrates that key care practices can help protect against NEC. Research has demonstrated that probiotics may be an effective tool to help prevent NEC and death in very low birth weight infants.
Learn about probiotics and NEC here.
NEC Long-Term Outcomes
Babies can thrive after NEC. Sometimes, babies do not have any long-term complications when they go home after a NEC diagnosis. Sometimes, babies experience mild to severe life-altering complications after they have been home from the NICU for weeks, months, or even years.
My child was recently diagnosed with NEC. What can I do?
You are not alone. We encourage you to learn as much as you can. You might consider starting with this resource, 10 Things All NICU Parents Need to Know.
Learning more about NEC can help you to advocate for your baby and make informed decisions. There is no one cause of this disease, and it is not your fault if your baby develops NEC.
View our resources for families who have recently experienced a NEC diagnosis.
My child recently passed away from NEC. Where can I find community?
We are so sorry for the devastating loss of your precious child.
If you have lost your child, we hope you will find a sense of connection and community within the NEC Society. We have resources built by families who have lost their own children to NEC, and reflect what we wish we had known when our child passed away.
Every family’s grief journey is different, and our resources are designed to help you navigate your path toward peace and connect with others who understand the depth of your loss.
About the NEC Society
What is the NEC Society?
The NEC Society is the world’s leading 501(c)(3) non-profit dedicated to building a world without NEC. The NEC Society is focused on accelerating research, advocacy, and education. The NEC Society was founded by Jennifer Canvasser in 2014 after she lost her son, Micah, to complications of the disease. The NEC Society is a collaborative organization bringing together families, healthcare providers, researchers, and other diverse stakeholders who are dedicated to preventing and improving outcomes for NEC. The NEC Society’s bylaws are available upon request.
What does the NEC Society do?
The NEC Society is bringing together patient-families, clinicians, and scientists to advance NEC research, education, and advocacy. Together, we will build a world without NEC so no baby or family has to endure the devastation of this cruel disease. Read the NEC Society’s 2025 Impact Report here.
Who does the NEC Society collaborate with?
The NEC Society collaborates with diverse partners, including academic institutions, clinicians, scientists, industry leaders, nonprofit organizations, and for-profit companies, who share our values and dedication to building a world without NEC. We welcome collaboration with any person, group, company, or organization with aligned values and mission in an unbiased and transparent manner to advance our work to prevent necrotizing enterocolitis (NEC) and improve outcomes for infants and families in the NICU.
Partnerships across sectors are essential to accelerating progress, advancing research, and fostering innovation. As we engage with industry, for-profit companies, and others, we maintain clear policies that protect the NEC Society’s objectivity, integrity, and commitment to our community. Working collaboratively is how we accelerate NEC research, education, and advocacy on behalf of infants and families for a world without necrotizing enterocolitis.
How does the NEC Society advance research?
Scientific Advisory Council: The NEC Society’s 12 seat Scientific Advisory Council is made up of the world’s leading experts in the field. The Scientific Advisory Council helps to lead the organization and ensures the NEC Society’s projects, content, and materials are driven by science.
NEC Biorepository: The collaborative NEC Biorepository has 8 research centers enrolling, 10 centers approved, and 1,139 babies enrolled in the NEC biorepository. The goal of the NEC biorepository is to launch research projects that improve our understanding of NEC and get us closer to a world without NEC.
Research Incubator: The NEC Society Research Incubator is made up of individuals from over 120 global institutions and provides a place for the international NEC community to engage and collaborate on research projects that matter to patient-families.
Research Awards: The NEC Society funds multiple awards that support the next generation of clinician-scientists dedicated to building a world without NEC.
NEC Registry: The NEC Registry is an online registry for patients and families who have been impacted by NEC. The primary aim of the NEC Registry is to conduct a prospectively planned and efficient natural history study that will lead to a better understanding of the disease and its course and pace over time.
Your donation supports the research, education, and advocacy needed to build a world without this devastating disease.
How does the NEC Society improve education?
Resources for families and clinicians: The NEC Society offers multiple educational resources that provide comprehensive, evidence-based information about NEC, and empowers parents to advocate for their child.
NEC Symposium: The NEC Society has organized the NEC Symposium biennially since 2017, uniting the global community for a world without NEC. The NEC Symposium, the world’s largest NEC-focused scientific conference dedicated to NEC. Join us for the upcoming NEC Symposium in San Diego on September 19-22, 2027, at the Hard Rock Hotel San Diego.
NEC Family Summit: In September 2026, the NEC Society is presenting the world’s first in-person NEC Family Summit — a space for families affected by NEC to connect, learn, and accelerate our mission, together.
Educational meetings and presentations: The NEC Society leads and participates in expert presentations at scientific and educational meetings, including presenting to the FDA, CDC, and NIH.
Your donation supports the research, education, and advocacy needed to build a world without this devastating disease.
How does the NEC Society increase advocacy?
NEC Awareness Month and Day: NEC Awareness Month (May) and Day (May 17) is a time for the global NEC community to unite in raising awareness for the urgent need to build a world without NEC.
NEC Awareness in Government: The NEC Society community has led the initiative to get 15 states and counting to formally recognize NEC Awareness Month and Day. Additionally, the NEC Awareness Resolution has been introduced into Congress annually since 2024.
Nonprofit Collaboration: Through partnerships with nonprofit organizations like the March of Dimes and the NICU Parent Network, the NEC Society participates in multiple advocacy events in the US Capitol that raise awareness for patient-family integration and shared decision making in the NICU.
Engagement with the FDA: The NEC Society continues to work with the FDA to help advocate for the neonatal community, from families to clinicians and scientists, to optimize the strategies and tools available to best support the health of infants and protect them from the devastation of NEC.
Your donation supports the research, education, and advocacy needed to build a world without this devastating disease.
What are the NEC Society's core values?
Centering patient-families: We empower the patient-family voice in our work. We work with no regard for financial gains, corporations, or special interest groups.
Research-Driven: Our work is evidence-based and dedicated to improving outcomes for babies and families.
Prioritizing DEI: Through humility and self-accountability, we strive to maintain a culture that is inclusive, understanding, and empowering for groups, individuals, and cultures historically vulnerable and marginalized in our society.
Collaboration: We use a team-based approach that brings together and respects the unique perspectives and contributions each stakeholder has to give.
Creative leadership: We encourage ourselves to lead – as individuals and as an organization – and to help nurture the leadership of others within our community.
Is the NEC Society involved with the formula lawsuits?
The NEC Society is not involved in litigation regarding formula and NEC, and lawsuits are not a strategy used by the NEC Society to advance our vision of a world without NEC. Read our statement on formula lawsuits here.
How can I get involved with the NEC Society?
Great question! There are many ways to get involved in our work to advance NEC research, education, and advocacy. Check out 20 ways to get involved here.
How can I share my story with the NEC Society?
Our stories demonstrate the urgency of our mission. If you have been touched by NEC, please share your story to help advance the NEC Society’s work and impact. Learn more about how to share your story here.
Financial, policy, and licensing FAQs
Answers to common questions about finances, policies, and licensing.
How do I donate to the NEC Society?
Your generosity enables the NEC Society to expand its work to build a world without necrotizing enterocolitis (NEC) through research, advocacy, and education. Donate or become a recurring donor here.
What does my donation help support?
The NEC Society is working tirelessly to bring together patient-families, clinicians, and scientists to advance NEC research, education, and advocacy. Every donation we receive brings us closer to our vision of a world without NEC. Your gift helps to ensure we have the capacity to expand our work and reach. View the NEC Society’s impact in 2025 here.
Who funds the NEC Society's work?
The NEC Society’s work is made possible primarily through support from individuals who intimately understand the devastation of this disease. Parents and loved ones, along with clinicians, are coming together to help advance our vision of a world without NEC through research, education, and advocacy.
The NEC Society is grateful for the generous funding awards received through the Patient-Centered Outcomes Research Institute (PCORI) and Chan Zuckerberg Initiative’s Rare As One Network.
The NEC Society accepts donations from for-profit companies that comply with our conflict of interest policy. Our Champions for a world without NEC believe in our vision and are helping us accelerate the pace of our movement.
Can I donate appreciated stock to the NEC Society?
Yes! To learn how you can donate appreciated stock, please email Jennifer@NECsociety.org
Can I use the NEC Society’s logo to create customized items or gear?
Please visit our online shop, where all proceeds support our mission to bring together patient-families, clinicians, and scientists to advance NEC research, education, and advocacy.
If we don’t have what you’re looking for, please email Sarah@NECsociety.org
The NEC Society’s logo can only be used for purposes that have been reviewed and approved by our team in accordance with the NEC Society’s Registered Trade/Word Mark and Licensing Policy.
Where can I find the NEC Society's 990?
What is the NEC Society's EIN?
The NEC Society is registered as the Necrotizing Enterocolitis Society and our EIN is 46-4426455.
Where can I find the NEC Society's policies?
Resources for families and clinicians
What resources are there for families in my NICU?
The NEC Society offers multiple educational resources that provide comprehensive, evidence-based information about NEC, and empowers parents to advocate for their child. Check out resources for your NICUs here.
How can I get Family Resource Boxes in my NICU?
If you are a clinician or healthcare provider wanting to get family resource boxes into your NICU, please click here.
If you would like to help get resource boxes into your local NICU, please email ErinPryor@NECsociety.org
When can I find definitions for medical terminology?
To meet the needs of our community, the NEC Society created a NEC glossary that simplifies complex medical terminology and empowers families to better understand their baby’s care in the NICU. Check out the NEC Glossary.
My child was recently diagnosed with NEC. What can I do?
You are not alone. We encourage you to learn as much as you can. You might consider starting with this resource, 10 Things All NICU Parents Need to Know.
Learning more about NEC can help you to advocate for your baby and make informed decisions. There is no one cause of this disease, and it is not your fault if your baby develops NEC.
View our resources for families who have recently experienced a NEC diagnosis.
My child recently passed away from NEC. Where can I find community?
We are so sorry for the devastating loss of your precious child.
If you have lost your child, we hope you will find a sense of connection and community within the NEC Society. We have resources built by families who have lost their own children to NEC, and reflect what we wish we had known when our child passed away.
Every family’s grief journey is different and our resources are designed to help you navigate your path toward peace and connect with others who understand the depth of your loss.
I am a parent of/or an individual who has been impacted by NEC. How can I contribute to NEC research?
The NEC Registry is a platform for patient-families to share their experiences with the disease. This is a powerful opportunity for individuals and families affected by NEC to contribute directly to research that will help us understand this devastating disease.
The NEC Registry brings the NEC community together and collects patient-driven data to help clinicians, scientists, and patient-families better understand and prevent NEC. Join the NEC Registry.
I have more questions, how do I contact the NEC Society?
Here’s how you can reach us:
NEC Society
907 3rd St. #128
Davis CA 95616
1-530-448-8088
Hello@NECsociety.org
Please note:
The NEC Society is a small team working tirelessly to build a world without necrotizing enterocolitis (NEC). We are always honored to connect with families and members of the global NEC community. Thank you for understanding that we cannot respond to every inquiry.
As the world’s leading nonprofit dedicated to NEC, our team serves a global community of thousands of families, clinicians, and researchers. Our mission and resources are focused on advancing research, education, and advocacy to protect every baby from NEC. We care deeply about our community and recognize that many families have needs that extend beyond the NEC Society’s current capacity.
The NEC Society does not provide or coordinate medical support, advice, or legal guidance. We are also unable to provide financial assistance, crisis intervention, or counseling. Requests requiring immediate assistance, medical care coordination, legal counsel, or urgent support should be directed to qualified healthcare providers, legal professionals, emergency services, or other support services.
Thank you for your understanding and for supporting our work to build a world without NEC.
