From Grassroots to Growth: Building Sustainable Community Health Programs

For nearly 70 years, the Sickle Cell Disease Foundation (SCDF) has supported patients through community-based programs rooted in trust, advocacy, and care.

As their programs expanded and funding opportunities arrived, new challenges emerged, requiring them to re-imagine data, reporting, and how to demonstrate impact to funders.

This session is focused on real experiences, lessons learned, and what it takes to grow without losing the heart of community-based care.

• How a 70-year-old organization has grown and adapted its programs over time
• Why data, reporting, and funding requirements became a turning point
• What it’s like to support patients as a community health worker in this space
• How SCDF transitioned from fragmented systems to a more coordinated model
• Lessons learned from scaling, and what they would do differently

• Organizations in the middle of their growth journey or considering how to scale without gaining complexity
• Organizations operating with multiple sub-organizations or programs reporting to them 
• Hubs, coalitions, and other collaborative groups
• Community-based organizations serving clients with specific health challenges or diseases