The Connecticut Newborn Screening Network (the Network), a program within the Office for Community Child Health, provides crucial support to families of infants who receive out-of-range newborn screening (NBS) results. Our goal is to ensure that every family—regardless of their background—has access to the necessary resources and guidance for timely diagnosis and care. We are excited to announce that we have received a grant from the Alexion Charitable Foundation (ACF), an organization dedicated to addressing health disparities within the rare disease community, to support our 2025 programming. Together, we will guide families through the complex journey to diagnosis and care.
Who We Are: The Connecticut Newborn Screening Network
The Connecticut Newborn Screening Network is a statewide program funded through a direct partnership with the Connecticut Department of Public Health. We respond to all reports of infants with out-of-range newborn screen results in the state. Our team works closely with primary care providers and specialists to initiate and support the diagnostic process when a newborn’s screening results indicate a potential health concern.
While our infrastructure is strong, we recognize the need to improve outreach and support, particularly for families facing barriers such as language, limited resources, or lack of access to technology. This is where our partnership with ACF becomes invaluable. Through their Rare Belonging® initiative, ACF supports organizations like ours that are committed to enhancing health equity and improving access to care, especially for underserved communities in the rare disease space.
Our Mission and What We Do
The Network’s main mission is to support families whose infants have out-of-range NBS results, which may indicate a rare disease. We offer education, guidance, and support to help them access follow-up care. Our team of newborn screening registered nurses (NBS RNs) is at the heart of this process, reaching out to families to explain results, answer questions, and offer support during this uncertain and stressful time.
Why We’re Partnering with the Alexion Charitable Foundation
The Alexion Charitable Foundation’s Rare Belonging® initiative focuses on addressing health disparities for individuals affected by rare diseases, particularly in underserved communities. Our mission aligns closely with one of ACF’s key funding priorities: to break down barriers to care and ensure equitable access to diagnostic services. Through the Rare Belonging® grant, ACF is helping the Network enhance its outreach and educational efforts, reducing delays in care and improving health outcomes for infants at risk for rare diseases.
What This Partnership Means for Families
With the support of a grant from the Alexion Charitable Foundation, we can implement several improvements to our services. Every family with out-of-range genetic results will now receive a personal outreach from a newborn screening nurse, who will provide education, outline the next steps, and offer guidance on necessary diagnostic labs.
We’ll also expand our use of technology to support families. Through the MyChart electronic health portal, families will be able to track their child’s progress, communicate directly with healthcare providers, and stay informed about their child’s care plan.
Recognizing that social factors like transportation and access to resources can create barriers to care, our newborn screening staff will begin assessing these factors early on. Families who need assistance will be connected with resources to ensure timely diagnosis and treatment.
Additionally, we are committed to increasing access to educational materials, particularly for non-English-speaking families. We will translate videos and resources into Spanish to ensure that language is not a barrier to understanding important health information.
A Brighter Future for All
At the Connecticut Newborn Screening Network, we believe that every family deserves equitable access to diagnosis, care, and the necessary resources to support their child's health. Our partnership with the Alexion Charitable Foundation will help us achieve this goal by providing families with the support, education, and tools they need to make informed health decisions and improve their children's health outcomes.
Together, we’re working toward a future where every family feels empowered, supported, and capable of navigating the healthcare system. With the help of ACF’s Rare Belonging® grant, we can continue breaking down barriers to care and making a meaningful difference for those affected by rare diseases.