Sickle Cell Disease Newborn Screening Follow-up Program | HRSA 21 036

Opportunity Information: Apply for HRSA 21 036

The Sickle Cell Disease Newborn Screening Follow-up Program (HRSA 21-036) is a discretionary federal funding opportunity run by the U.S. Department of Health and Human Services through the Health Resources and Services Administration (HRSA). It is offered as a cooperative agreement, which typically means funded recipients are expected to work closely with HRSA in implementing the program rather than operating with complete independence. The overall aim is to strengthen what happens after a newborn screening result suggests a baby may have sickle cell disease, so that families do not get lost between screening, confirmatory diagnosis, and ongoing care.

At its core, the program focuses on improving access to timely, high-quality sickle cell disease care starting at the earliest possible point: the newborn screening notification. Funding is intended to support active outreach to families from the moment a screen indicates possible SCD, continuing through confirmatory testing, entry into appropriate treatment, and long-term follow-up. This includes helping families navigate next steps, reducing delays in diagnosis, and supporting continuity of care so that children with SCD are connected to the right services early, when prevention measures and routine care can have the greatest impact.

A major component of the opportunity is education and information-sharing. Recipients are expected to provide education to both families and healthcare providers, helping parents and caregivers understand the condition, immediate priorities after diagnosis, and how to access specialized care. On the provider side, the program supports better awareness of evidence-based practices and the importance of rapid follow-up after a positive newborn screen. In addition to direct education, the program emphasizes disseminating practical resources that families and clinicians can use, which can include guidance materials, referral tools, and information about local and regional SCD support services.

The notice also highlights coordination and collaboration as essential. Awardees are expected to work in partnership with state newborn screening programs, since those programs are the gateway for identifying infants who need follow-up. The goal is to strengthen the handoff from screening programs to clinical care systems and community supports, improving how information flows and ensuring that follow-up is consistent and reliable. This collaboration is meant to help close gaps that can occur when screening identifies risk but families face barriers such as limited specialist availability, transportation issues, insurance challenges, or lack of familiarity with SCD care pathways.

Another central expectation is linking individuals and families to broader community resources and care coordination. The program is designed to connect families not only to clinical services but also to supportive services in the communities where they live, to the fullest extent possible. That includes helping families access evidence-based sickle cell care, connect with comprehensive SCD programs when available, and coordinate among primary care, hematology specialists, hospitals, and community-based supports. The intent is to create a more connected support system around the child and family, rather than leaving them to navigate complex systems alone.

From a funding perspective, the opportunity listed an award ceiling of $184,000 per award and anticipated making about 20 awards. The opportunity was created on February 22, 2021, with an original application closing date of April 29, 2021. The CFDA number associated with this funding is 93.110. Eligibility is listed broadly as "Others," with additional details referenced in the full eligibility section of the notice, indicating that applicants needed to consult the announcement for the specific types of organizations allowed to apply.

Overall, this grant opportunity is about making newborn screening results meaningful in practice by ensuring that a positive screen for sickle cell disease triggers fast, organized follow-up that leads to diagnosis, education, treatment initiation, and long-term connection to coordinated, evidence-based care and community supports. The program is structured to reduce delays, improve navigation for families, strengthen provider and family knowledge, and build partnerships between screening systems, healthcare systems, and community resources so that children identified through newborn screening can get the right care as early and as consistently as possible.

• The Department of Health and Human Services, Health Resources and Services Administration in the health sector is offering a public funding opportunity titled "Sickle Cell Disease Newborn Screening Follow-up Program" and is now available to receive applicants.
• Interested and eligible applicants and submit their applications by referencing the CFDA number(s): 93.110.
• This funding opportunity was created on Feb 22, 2021.
• Applicants must submit their applications by Apr 29, 2021. (Agency may still review applications by suitable applicants for the remaining/unused allocated funding in 2026.)
• Each selected applicant is eligible to receive up to $184,000.00 in funding.
• The number of recipients for this funding is limited to 20 candidate(s).
• Eligible applicants include: Others (see text field entitled Additional Information on Eligibility for clarification).

Apply for HRSA 21 036

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