FEATURED STORIES
From Surviving NEC to Propelling the NEC Society
The Necrotizing Enterocolitis (NEC) Society brings together patient-families, clinicians, researchers, and other stakeholders to advance research, education, and advocacy. Our vision is a world without NEC.
The NEC Society has received funding from the Patient-Centered Outcomes Research Institute (PCORI) and Chan Zuckerberg Initiative's Rare as One Network. These awards, along with donations from many generous, independent donors, have propelled our research initiatives, expanded our staff, and allowed for imperative outreach to families affected by NEC. To ensure our organization can continue to expand our capacity and reach, we are looking for donors who can support:
NEC RESEARCH:
https://necsociety.org/nec-society-research-collaborative/
NEC EDUCATION:
https://necsociety.org/resources-for-families-and-survivors/
NEC Advocacy:
https://necsociety.org/2021/04/17/nec-awareness-day-what-you-can-do/
NEC disproportionately affects Black and Hispanic infants and families with substantially higher rates of both NEC incidence and mortality. Yet, there has been little effort to date focused on equity and representation within NEC research. Our team is eager to transform this unacceptable reality. Five team leads on this project are core members of the NEC Society and are committed to advancing the NEC Society’s Inclusivity Policy. The NEC Society deliberately prioritizes diversity by constantly striving to build an ever more inclusive community, internal and external of the organization. The NEC Society aims to ensure that all individuals and groups touched by NEC see themselves reflected within the organization and feel a strong sense of belonging. The NEC Society intentionally supports the empowerment of women, people from diverse backgrounds, the LGBTQIA+ community, people with disabilities, and groups that have been historically marginalized.
We recognize that it is not enough to simply value diversity and inclusion. The NEC Society is dedicated to transforming our values into actions. One specific strategy includes strategically expanding the NEC Society’s 12-seat Patient & Family Advisory Council (PFAC) and reserving seats for distinct life experiences and attributes. For example, our PFAC has seats reserved for bereaved families, adult survivors of NEC, and Black patients/families, which helps to ensure we are best positioned to serve our community. Our PFAC is critical to the organization’s work and will provide feedback and guidance throughout the duration of this project from a patient and family perspective through an equity lens.
Organization name
NEC Society
other names
Necrotizing Enterocolitis Society
2014
Tax id (EIN)
46-4426455
Mission Category
Health Care
Operating Budget
$250,001-$500,000
Organization Need
Funding: Unrestricted, Funding: Program, Funding: Other
Demographics Served
Youth & Children
Local Counties Served
El Dorado, Placer, Sacramento, Yolo
Address
140 B Street, Ste 5, #128US