COMMUNITY CONSORTIUM
A NATIONAL CONVENING OF SICKLE CELL STAKEHOLDERS
The Sickle Cell Community Consortium (SC3) and the Sickle Cell Disease Coalition (SCDC) invite SCDC members, SC3 partners, SCDAA chapters, as well as other Key Partners and stakeholders from organiztions working across the sickle cell ecosystem, to participate in the in-person "SCD Unified Action Forum".
WHAT IS SCDC?
The Sickle Cell Disease Coalition (SCDC) is a global alliance of organizations committed to improving outcomes for individuals living with sickle cell disease (SCD). We bring together a vibrant network of 100+ member organizations - including public health entities, researchers, healthcare providers, federal agencies, foundations, faith-based groups and patient advocacy organizations - to drive collaborative action and amplify community voices.
WHO IS SC3?
The Sickle Cell Community Consortium (SC3) is a national, community-driven network dedicated to improving outcomes for individuals and families affected by sickle cell disease. SC3 brings together patients, caregivers, community-based organizations, and advocates to strengthen leadership, build community capacity, and advance collective priorities within the sickle cell ecosystem. Guided by its General Assembly of Patients, Caregivers, and Community-Based Organizations, the Consortium ensures that lived experience remains central to decision-making and advocacy efforts. SC3 also convenes cross-sector partners, including healthcare providers, researchers, industry, government, and other stakeholders, to foster collaboration, elevate the patient voice, and drive systems-level change in care, policy, and research. Through convenings, training initiatives, and strategic partnerships, the Consortium works to empower the community and transform the power of the patient voice into meaningful action.
WHAT IS THE SCD UNIFIED ACTION FORUM?
SCD Unified Action Forum: A National Stakeholder Convening is a collaborative gathering co-hosted by the Sickle Cell Disease Coalition and the Sickle Cell Community Consortium (SC3) to bring together leaders from across the sickle cell ecosystem. The convening creates a structured space for patients, caregivers, community-based organizations, clinicians, researchers, policymakers, industry partners, and other stakeholders to engage in dialogue, share insights, and align around shared priorities. The forum is designed to strengthen coordination across sectors, identify opportunities for collaboration, and advance actionable strategies that improve care, research, and policy for people living with sickle cell disease. By centering the patient and community voice, the convening aims to foster unified action and accelerate meaningful progress across the national sickle cell landscape.
ABOUT SC3
The Sickle Cell Community Consortium is a US-based non-profit formed in 2014 to “harness and amplify the power of the patient voice”. The Consortium is comprised of sickle cell community-based organizations (CBOs), patient and caregiver advocates, community partners and medical and research advisers. These stakeholders collectively form the General Assembly of CBOs and Advocates, the decision-making body of the Consortium. The Consortium acts as an organizing entity providing the framework for the stakeholders of the General Assembly to apply a model of Collective Impact to define problems and gaps in the sickle cell community, identify strategies to address those needs and gaps, and determine the CBO, Community, and Corporate partnerships best equipped to implement those strategies to achieve significant and sustainable change.