What is NEC? What causes NEC? How common is NEC?
Please visit necsociety.org/nec-now/ for a detailed description of necrotizing enterocolitis (NEC). Briefly, NEC is a devastating intestinal disease of severe inflammation that primarily affects premature and medically fragile babies. Approximately 500 infants die from NEC each year in the US and thousands more are diagnosed and survive, often with life-long complications such as short-bowel syndrome. You can also learn more about NEC here.
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.
What does the NEC Society do?
The NEC Society is focused on advancing education, advocacy, and research that is meaningful to patient-families. 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)
- Educational materials
- Advocacy work
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
- 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
- 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 other resources by clicking on “For Families” at NECsociety.org
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 stillstandingmag.com and connecting with other families who have lost a child to NEC. 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:
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 here.
Thank you for taking the time to learn about our work to build a world without necrotizing enterocolitis!