Support for preemies at every stage
Parents of premature infants are often caught unprepared by early birth, and can quickly become overwhelmed by their new child’s needs and the unfamiliar world of the NICU.
These moms and dads are thrust into a high-stress, high-stakes situation where they are expected to make decisions for their child based on medical information they have no prior exposure to. We understand the singular and often difficult position parents of premature children find themselves in after experiencing early birth.
Neonatal professionals don’t always have enough time to seek out resources to learn how to relay sensitive subjects to parents. We provide that coaching to the dedicated men and women of the NICU. We also strive to celebrate those who give so much of their time to fight the effects of premature birth.
To create and curate equitable access of underserved populations to patient education, advocacy tools and outcomes data specific to the preemie population.
“The NICU is a huge shock. Everything you knew up until that point is suddenly up-ended and you feel like you are on another planet. We want you to know that it’s normal and okay to feel this way.”Deb Discenza, Executive Director, PreemieWorld Foundation, Inc.
Cutting Edge Research
Preemie Crystal Ball is the passion-project of PreemieWorld Foundation’s Executive Director Deb Discenza, a longtime advocate for preemie families. Their goal is to provide patient-focused care based on better data. Simply put, Preemie Crystal Ball is a research portal being developed for the preemie community through the lifespan of pregnancy to birth to childhood, adolescence, adulthood and the geriatric years.FIND OUT HOW YOU CAN PARTICIPATE
“PreemieWorld offers a space for parents and professionals to bridge the divide between the stresses of the NICU and the families behind the incubator.”Deb Discenza, PreemieWorld CEO