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.
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.
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?
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
- 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 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. You can find more resources by visiting our page for families and survivors.
The NEC Society offers free resource boxes for families. Follow the link to place your order today.
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 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 patient-families and clinicians alike in understanding necrotizing enterocolitis (NEC).
