A message from our Founder
Our Impact
Thanks to the generosity, kindness, and flexibility of many, we expanded and diversified our global NEC community throughout 2020. We joined the Chan Zuckerberg Initiative’s Rare As One Network and launched our NEC Research Priorities project, made possible through an Engagement Award from the Patient-Centered Outcomes Research Institute (PCORI).
We are delighted to share some of our proudest accomplishments of 2020, outlined below.
Jennifer Canvasser, Founder & Executive Director
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$450,000 Awarded from CZI
In addition to funding, CZI is providing the NEC Society with training, community mentorship, and capacity-building services. Through the Rare As One Network, the NEC Society will share feedback with and learn from the other 29 patient-led rare disease organizations.
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Launched Research Project on Long-Term Outcomes
We are grateful to our patient-family community who helped to build and launch this research project, and who took the time to respond by sharing their family’s personal experience with NEC. This project seeks to understand how NEC affects children, families, and young adult NEC survivors, years after their original NEC diagnosis.
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PCORI Project: Determining NEC Research Priorities
Over the course of this project, 11 patient-families personally affected by NEC and 11 clinician-scientists formed a team to identify the most pressing patient-centered research questions.
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Pediatric Research
We published 11 manuscripts focused on NEC in a special supplement to the journal.
