Frequently Asked Questions about the NEC society
The NEC Society is the world’s leading non-profit dedicated to NEC.
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Common Organizational 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 support you with reliable information and resources to better understand and address this devastating disease.
Understanding NEC
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 is a devastating intestinal disease that primarily affects premature and medically fragile babies.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). There is a critical unmet need to address significant gaps in our understanding of the pathogenesis of NEC and improve the diagnosis, prevention, and treatment of NEC.
Infants that survive NEC often struggle with life-long complications such as short-bowel syndrome. Learn more about this disease.
My child was recently diagnosed with NEC. What can I do?
We are here for you, please do not hesitate to reach out. 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.
The NEC Society offers free resource boxes for families. Follow the link to place your order today.
My child recently passed away from NEC. Where can I find support?
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. Our resources are 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 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:
- Biennial NEC Symposium, an internationally attended conference that brings together diverse stakeholders in the NEC community.
- NEC Awareness Day (May 17)
- Research Incubator
- NEC Biorepository
- Recently Diagnosed Resources
- Resources for Bereaved Families
- 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?
Blue and Yellow.
Blue represents the grief, trauma, and heaviness that families experience after a child is affected by NEC. Yellow, with boundless swirls, represents the hope for a world without NEC, and the light of our children in our arms and in our hearts.
When blue and yellow come together, we have a path toward a world without NEC through research, education, and advocacy.
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 Sarah@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
- 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:
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.
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.
Does the NEC Society have a Conflict of Interest policy?
Yes! You can read it 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.
Learn more and join us at NECsociety.org/NEC-society-Champions
Where can I find the NEC Society's 990?
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 patient-families and clinicians alike in understanding necrotizing enterocolitis (NEC).
