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Hello California Sickle Cell Stakeholders,
As we’ve entered the second half of year 2 of our project, we’re grateful for the opportunity to update you on our recent work, celebrate progress, and continue building momentum through our shared commitment to increased understanding of the sickle cell disease community and better health outcomes for SCD warriors across California and beyond.
In this issue, you’ll find funding updates, program highlights, upcoming opportunities to collaborate, and ways to stay engaged. Thank you for being part of this critical community of partners.
Federal Funding Updates:
As part of a broader Reduction in Force, CDC announced the closure of the Division of Blood Disorders—home to the Sickle Cell Data Collection (SCDC) program. Because the California SCDC program is fully federally funded, this decision places the future of our work in jeopardy.
We have submitted our continuation application for Year 3, but we have not heard from CDC or any federal representatives about funding for SCDC or related programs beyond September 30, 2025. In the meantime, we are focused on completing key updates to our cohort file and wrapping up planned analyses and activities before the end of the current grant period.
While we are proactively preparing for potential funding gaps, including strategies to maintain our data infrastructure and explore new partnerships, the risk of losing the hard-won progress and linked datasets we've built over time is real. With your continued engagement, we’re hopeful we can preserve this vital work and plan for what comes next.
We are incredibly grateful for the advocacy and support many of you have already offered. Please continue to elevate the value and impact of the SCDC program wherever you can—awareness goes a long way. Including SCDC data in grant applications helps demonstrate both the utility and demand for this work. If you’re aware of aligned funding opportunities or partners interested in using our data, we’d welcome the connection.
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