Rare Disease Day is February 28th.
Ask any NICU parent or healthcare provider and they are likely to tell you that NEC is not rare in the NICU. NEC affects thousands of premature and medically fragile infants every year. Indeed, when your own child or family is affected by a rare disease, it certainly doesn’t feel rare.
To some in the NEC community, it may feel strange for NEC to be called a rare disease. While it is important for us to emphasize how frequently NEC happens in the NICU, it is equally important for us to recognize the challenges of understanding, treating, and preventing an overall rare disease such as NEC. Necrotizing enterocolitis is a rare disease because it affects fewer than 200,000 people in the United States. Accordingly, the everyday challenges that we face in the NEC community, specifically as we work to accelerate research, secure funding, and connect with others affected by the disease, are common across all rare disease communities.
Over the last year as a member of the Chan Zuckerberg Initiative’s Rare As One Network, the NEC Society has become active in the National Organization for Rare Disorders (NORD) and Global Genes (Rare Disease Advocacy). We have formed partnerships and friendships with other patient-led rare disease non-profits working to advance research in their own communities. By working together, we are able to share resources, tools, expertise, and connections, thus increasing our pace and efficiency.
You can support the NEC Society’s vision of building a world without necrotizing enterocolitis through research, advocacy, and education by making a donation here.
You can learn more about Rare Disease Day by clicking here.