The Necrotizing Enterocolitis (NEC) Society is one of 30 patient-led organizations to become part of the Chan Zuckerberg Initiative’s Rare As One Network. The Rare As One Network aims to support patient communities in accelerating research and driving progress in the fight against rare diseases.
While NEC meets the definition of a rare disease, parents and healthcare providers know that NEC is not rare in the neonatal intensive care unit (NICU). NEC is a multifactorial intestinal disease that causes one in 10 deaths in U.S. NICUs. NEC affects thousands of babies each year in the U.S., primarily premature and medically fragile infants in their first few weeks and months of life. Often, these babies are progressing well and appear to have overcome many challenges of an unstable medical course when the devastation of NEC strikes. Approximately 20 – 30% of the babies who are diagnosed with NEC die within hours or days of their diagnosis. Too often, their parents do not even have time to say goodbye. The babies who do survive often have lifelong nutritional and neurological complications. Most parents have never heard of NEC until their baby is diagnosed with the disease.
Like many other rare diseases, NEC is poorly understood, with inadequate prevention and treatment options. Patient-families who have lived the devastation of this disease are key to driving breakthroughs in research and treatment, but a lack of funding and infrastructure has thwarted progress for decades. The Chan Zuckerberg Initiative is working to change this through the Rare As One Network.
“No one is more committed to finding cures for rare diseases than the patients and families of those affected by these disorders,” said Priscilla Chan, Co-Founder & Co-CEO of CZI. “We are proud to support the NEC Society as they pursue prevention and treatment options in partnership with researchers and clinicians.”
The Rare As One Network includes diverse groups that are dedicated to finding cures for a broad range of diseases such as rare cancers and neurodegenerative and autoimmune diseases. The full list of Rare As One grantees is available here.
Founder and Director of the NEC Society, Jennifer Canvasser, shares, “We are profoundly grateful to the CZI team and are eager to participate in the Rare As One Network. This remarkable opportunity brings us one step closer to a world without NEC.”
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.
“We’re excited to welcome this group of grantees — led by patients and caregivers with diverse backgrounds, perspectives, and expertise — to work together and learn together,” said Tania Simoncelli, CZI Science Policy Director and Rare As One Project lead. “We hope the support, training, and mentorship provided through CZI’s program will be transformative and serve as a model that can be catalytic for other groups battling rare diseases.”
With guidance from patient communities, rare disease experts, and advocacy organizations, the Rare As One Network will help the NEC Society community of patients, researchers, and clinicians work together to advance progress against this devastating neonatal disease.
About the NEC Society
The NEC Society was founded in 2014 by Jennifer Canvasser and is led by patient-families working hand-in-hand with renowned scientists and physicians in the NEC community. The NEC Society aims to build a world without necrotizing enterocolitis by uniting diverse stakeholders, advancing research, and advocating for higher standards of care. For more information, please visit www.NECsociety.org
About the Chan Zuckerberg Initiative
Founded by Dr. Priscilla Chan and Mark Zuckerberg in 2015, the Chan Zuckerberg Initiative (CZI) is a new kind of philanthropy that’s leveraging technology to help solve some of the world’s toughest challenges — from eradicating disease, to improving education, to reforming the criminal justice system. Across three core Initiative focus areas of Science, Education, and Justice & Opportunity, we’re pairing engineering with grant-making, impact investing, and policy and advocacy work to help build an inclusive, just and healthy future for everyone. For more information, please visit www.chanzuckerberg.com