NECROTIZING ENTEROCOLITIS SOCIETY
Building a world without necrotizing enterocolitis
Mission
The NEC Society is a patient-led 501(c)3 nonprofit organization that brings together patient-families, clinicians, and other stakeholders to build a world without necrotizing enterocolitis (NEC). The NEC Society is committed to advancing NEC research, education, and advocacy.
Ruling year
2014
Founder and Director
Jennifer Canvasser
Main address
140 B St. Suite 5 #128
Davis, CA 95616 USA
EIN
46-4426455
NTEE code
Alliance/Advocacy Organizations (G01)
IRS filing requirement
This organization is required to file an IRS Form 990 or 990-EZ.
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Communication
Programs and results
What we aim to solve
Our programs
What are the organization's current programs, how do they measure success, and who do the programs serve?
NEC Biorepository
The NEC Biorepository is essential to advancing the science that will lead to the development of novel diagnostic approaches and provides an opportunity to facilitate collaborations between multiple centers and expand the available number of patients, biological samples, and corresponding clinical data. The ultimate goal is to develop a biomarker or genetic test to predict a baby’s risk of developing necrotizing enterocolitis and offer preventive strategies against it.
NEC Society Research Incubator
The NEC Society Research Incubator fosters multi-center collaboration among clinicians and research scientists to accelerate research that is meaningful to patient-families.
NEC Research Prioiritization
The goal of this project is to determine research priorities for the NEC Community. The NEC Society has convened a panel of patient-families, researchers and clinicians to identify the most pressing and important research topics for the field, with a special focus on patient-centered outcomes research projects. We will disseminate our findings (via webinar and print) and produce project guidelines for other rare disease communities.
Family Resource Box program
Families affected by necrotizing enterocolits (NEC) often experience feelings of isolation, along with a lack of resources and information about the disease. The NEC Society's Family Resource Packets contain up-to-date information about NEC and resources to empower, educate, and support families.
At limited neonatal intensive care units (NICUs) in the United States, a family whose baby was recently diagnosed with NEC or passes away from NEC can request one of our Family Resource Packets.
Where we work
External reviews
Photos
Videos
Our results
How does this organization measure their results? It's a hard question but an important one.
Number of convenings hosted by the organization
This metric is no longer tracked.Totals By Year
Population(s) Served
People with diseases and illnesses
Type of Metric
Output - describing our activities and reach
Direction of Success
Holding steady
Context Notes
Education is central to the mission of the NEC Society. Through webinars and our Biannual Symposia, we disseminate the latest information about research, best practices, and needs of the community.
Our Sustainable Development Goals
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Goals & Strategy
Reports and documents
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Operations
The people, governance practices, and partners that make the organization tick.
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NECROTIZING ENTEROCOLITIS SOCIETY
Board of directorsas of 03/21/2022
Rebecca Meuninck
Amena Mebane
Jenny Quinn
Lindsay Pollak
Adam Masin
Jolene Jacobs
Susan Perez
Noelle Sechrest
Organizational demographics
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Leadership
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