ROP: Prevent Blindness Resources & Awareness | Prevent Blindness
- February marks Retinopathy of Prematurity (ROP) Awareness Week, February 23rd to March 1st, 2026, as declared by Prevent Blindness.
- ROP develops in premature infants or those with low birth weight due to abnormal blood vessel growth in the retina.
- Prevent Blindness is actively working to address the challenges posed by ROP through a multi-faceted approach.
February marks Retinopathy of Prematurity (ROP) Awareness Week, , as declared by Prevent Blindness. This initiative is part of a broader national effort to educate families and healthcare professionals about ROP, a leading cause of lifelong visual impairment, and to provide support to those affected by this condition.
ROP develops in premature infants or those with low birth weight due to abnormal blood vessel growth in the retina. If left untreated, it can lead to partial or complete vision loss. Early screening, timely intervention, and ongoing eye care are crucial for preventing these outcomes.
Understanding ROP and the Prevent Blindness Initiative
Prevent Blindness is actively working to address the challenges posed by ROP through a multi-faceted approach. This includes providing accessible resources such as fact sheets, web pages, social media graphics (available in both English and Spanish), and videos featuring medical experts and personal testimonials from individuals living with ROP. These materials are designed to empower families and healthcare providers with the knowledge they need to navigate the complexities of this condition.
The organization’s commitment extends beyond informational resources. Prevent Blindness is currently conducting a focus group and data study to better understand the experiences of families with children diagnosed with ROP, particularly those who have spent time in the neonatal intensive care unit (NICU). The goal is to identify barriers to accessing eye care and to improve support systems for these families.
Support for Families and Healthcare Professionals
Recognizing the unique needs of families navigating a ROP diagnosis, Prevent Blindness collaborates with several key organizations, including Hand to Hold, the National Coalition for Infant Health, and the SPAN Parent Advocacy Network. These partnerships aim to provide comprehensive support, ranging from peer support groups to educational resources and advocacy training.
The initiative also acknowledges the critical role of healthcare professionals. Prevent Blindness offers expert-approved materials tailored for neonatologists, nurses, and other professionals involved in the care of premature infants. These resources focus on creating a holistic support system for families both during their time in the NICU and after discharge.
New Resources and Personal Stories
As part of ROP Awareness Week, Prevent Blindness will release a new episode of its “Focus on Eye Health” podcast featuring Tracy P., a parent who will share her personal journey navigating a ROP diagnosis and care for her child. A February episode of the podcast features Daria B., who discusses her experience living with ROP and the importance of access to education, resources, and support programs like the Prevent Blindness ASPECT Patient Engagement Program.
Data Analysis to Improve ROP Care
Prevent Blindness is also partnering with NORC at the University of Chicago to analyze Medicaid claims and encounter data from through . This analysis aims to identify and quantify ROP cases, examine geographic variations in incidence, and assess healthcare utilization patterns. The findings will be used to inform best practices for parent education and support, and to improve access to care for children with ROP.
The data analysis will specifically focus on:
- Determining the incidence and prevalence of ROP among infants enrolled in Medicaid.
- Identifying geographic areas with higher concentrations of ROP cases.
- Analyzing demographic and clinical characteristics of ROP patients.
- Evaluating healthcare utilization patterns, including screening frequencies and treatment adoption.
A Commitment to Preventing Vision Loss
“The impact that Retinopathy of Prematurity has on the developing eyesight of newborns, as well as to their overall health, is significant,” said Jeff Todd, president and CEO of Prevent Blindness. “By providing free, helpful resources to families of newborns and all children with ROP, as well as to healthcare professionals, we are aiming to minimize the effects of this condition and prevent significant vision impairment in the future.”
For more information about ROP and the resources available through Prevent Blindness, visit PreventBlindness.org/retinopathy-of-prematurity-rop/. Those interested in participating in the ROP Parents/Guardians Focus Group can contact [email protected].