A non-profit organization dedicated to building a world without necrotizing enterocolitis (NEC), a devastating intestinal disease that primarily affects premature and medically fragile infants.

NEC Society

The NEC Society, a 501(c)(3) non-profit organization dedicated to building a world without necrotizing enterocolitis (NEC). NEC is a devastating intestinal disease that primarily affects premature and medically fragile infants. The NEC Society brings together patient-families, clinicians, scientists, and other diverse stakeholders who are committed to preventing NEC and improving outcomes for our most vulnerable babies. 

You can make a difference in the lives of vulnerable babies and their families today: necsociety.kindful.com.

NEC is riddled with unanswered questions. And unfortunately, not even Sherlock Holmes can solve every mystery at once. That's why, with the support of the Patient-Centered Outcomes Research Institute (PCORI) and Chan Zuckerberg Initiative (CZI), we gathered a team of NEC patients, families, and clinicians to determine the NEC mysteries that most urgently need to be solved. In the end, we built a prioritized research agenda that ensures we will channel our energy into the topics that are most meaningful to every member of the NEC community.

#PreventNEC #NECAwarenessMonth #NECday #necrotizingenterocolitis #NICU #healthcare #research #patients #prioritization #mystery #RareAsOne #raredisease #PCOR

Great team to work with!!
NEC Society 💙💚

Amazing team with an incredible mission!💚💙

We are so proud of our team for working tirelessly for a world without necrotizing enterocolitis (NEC). We are bringing together patient-families, clinician-researchers, and elected officials to raise the profile of this devastating neonatal disease. 
Thanks to our community's efforts, our families have partnered with elected officials to declare May 17 as NEC Awareness Day in California, Colorado, Georgia, Louisiana, New York, Pennsylvania, and Utah. We also want to highlight San Antonio, TX (thanks to Rexton's family!) and São Paulo, Brazil (thanks to Tom's family!) for recognizing NEC Awareness Day! 
In addition to our state-level efforts, Congressman Mike Thompson (CA-04) partnered with Congressman Kevin Kiley (CA-03) and introduced the NEC Awareness Day Resolution in the US House of Representatives on May 17, 2024. 
It's been nonstop for our NEC Society team, and we will keep moving forward, bringing us closer to a world without NEC. 
You can help us #preventNEC at NECsociety.org

May is #NECawareness Month and May 17 is #NECawareness Day. Listen to Ashleigh Grant share her family's heartbreaking and powerful story.
Ashleigh joined the NEC Society's Patient-Family Advisory Council after losing her daughter, Matilda, to necrotizing enterocolitis (NEC). Based in Australia, Ashleigh is helping the NEC Society expand the organization's international presence and representation. Matilda's twin sister and older sister carry Matilda's memory along with their mother, Ashleigh, on NEC Awareness Day and every day. 
Learn more about how we're advancing NEC research, education, and advocacy for a world without this devastating disease, and join us at NECsociety.org
#preventNEC

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