Frequently Asked Questions about NEC
Find answers to common questions about necrotizing enterocolitis, its impact, and how the NEC Society supports affected families and advances research.
clear, concise answers
Necrotizing enterocolitis (NEC) is a devastating disease that primarily affects premature and medically fragile infants. At the NEC Society, we understand how overwhelming it can be to navigate the complexities of this condition. That’s why we’ve created this FAQ page—to provide clear, concise answers to some of the most common questions about NEC. Whether you’re a parent, healthcare provider, or advocate, our goal is to support you with reliable information and resources to better understand and address this serious disease.
What is NEC? What causes NEC? How common is NEC?
Briefly, NEC is a devastating intestinal disease of severe inflammation that primarily affects premature and medically fragile babies. The NICHD estimates that NEC affects about 9,000 of the 480,000 infants born preterm each year in the United States, and up to 40% (3,600) of these infants die from NEC. The infants that survive often struggle with life-long complications such as short-bowel syndrome. Learn more about this disease.
What is the NEC Society?
The NEC Society is a 501(c)(3) non-profit, patient-led organization 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 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 focused on advancing education, advocacy, and research that is meaningful to patient-families. You can click here to learn about our work and impact. Some of the NEC Society’s activities include:
- Research
- Biennial NEC Symposium, an internationally attended conference that brings together diverse stakeholders in the NEC community.
- Webinars
- NEC Awareness Day (May 17)
- Educational materials
- Advocacy work
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
What colors represent NEC Awareness?
A worldwide group of NEC-focused nonprofits came together to designate blue and green as the official colors of NEC awareness. Blue represents peace and healing, and green represents digestive system disease awareness.
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 build a world without NEC. If we don’t have what you’re looking for, please email Erin@NECsociety.org We kindly ask that the NEC Society’s logo only be used for non-profit purposes which have been reviewed and approved by our team in accordance with the NEC Society’s Registered Trade/Word Mark and Licensing Policy.
How can I support and get involved in the NEC Society?
Great question! You can:
- Make a gift to the NEC Society
- Encourage your loved ones to support this work
- Check out & share our case for support
- Join our listserve
- Follow us on social media
- Subscribe to our blog
- Share your story with us
What resources do you have for healthcare providers?
We have many resources for healthcare providers, including:
- Pediatric Research Supplement: Building a World Without NEC
- Seminars in Pediatric Surgery
- Cardiac NEC webinar
- Probiotics webinar series
- Human milk webinar series
- 10 Things All Parents Need to Know
- How to Optimize MOM in the NICU
- NEC Biorepository
My child was recently diagnosed with NEC. What should I do?
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. You can find more resources by visiting our page for families and survivors.
My child recently died from NEC. Where can I find support?
We are so sorry for the devastating loss of your precious child. You might consider visiting our page for Bereaved Families as well as stillstandingmag.com. The NEC Society is focused on research, advocacy, education, and raising awareness. While the NEC Society hosts an online support community through Inspire necsociety.org/join-the-nec-societys-online-support-community/ it hasn’t been as active as we had hoped. You can consider using one of the private/public Facebook groups below which are not in any way affiliated with the NEC Society:
https://www.facebook.com/groups/76325655319/about/
https://www.facebook.com/groups/1760414394207616/
https://www.facebook.com/groups/258657508003630/?ref=br_rs
https://www.facebook.com/groups/necsa/
https://www.facebook.com/groups/Necuk/
What are the long-term complications of NEC?
The long-term outcomes of NEC are not well documented but we are working to gain a better understanding through our research project. Learn more from our partner publication.
What are probiotics and how do they relate to NEC?
Probiotics are live microorganisms (like bacteria) that are intended to have health benefits when consumed or applied to the body. Probiotics can be considered as a strategy to help reduce the risks of NEC and death in very low birth weight infants (VLBWs).
Additional research is still required to better understand the effectiveness of probiotics in preventing NEC and other outcomes, and to resolve uncertainties around optimal probiotic strain or combination of strains, optimal dose, and duration of treatment.
Despite these knowledge gaps, NICUs across the United States and elsewhere in the world have implemented the routine use of probiotics as a strategy to reduce the risk of NEC and death at their centers. The NEC Society urges centers, professional associations, and clinicians to integrate families into the decision-making process regarding the use of probiotics in preterm infants.
What is the NEC Society’s Gift Acceptance Policy?
The NEC Society relies on and is grateful for unrestricted financial contributions, in-kind donations, and volunteer support from individuals, organizations, corporations, foundations, and government agencies that align with our values and believe in our vision of a world without NEC. Learn more about the gift acceptance policy.
Does the NEC Society have a conflict of interest policy?
Yes, the purpose of the policy is to protect the NEC Society’s interest when entering into a transaction or arrangement where an NEC Society officer or director might benefit. The document outlines items such as definitions, procedures to disclose and address conflicts, violations, reviews, etc. Learn more about this policy.
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.
What is the NEC Society’s EIN?
The NEC Society is registered as the Necrotizing Enterocolitis Society and our EIN is 46-4426455.
I have more questions. How do I contact the NEC Society?
Here’s how you can reach us:
NEC Society
140 B St. Ste 5 #128
Davis CA 95616
1-530-448-8088
Helpful Articles
This collection of articles is designed to support families, caregivers, and healthcare professionals in understanding necrotizing enterocolitis (NEC).
