COMMUNITY CONSORTIUM
SUMMIT
The Sickle Cell Community Consortium (SC3) invites you to the 9th Annual Leadership Summit & General Assembly, a hands-on, interactive gathering designed to equip sickle cell patients, caregivers, CBO leaders, and advocates with the skills, strategies, and resources needed to create lasting change.
This annual convening brings together those on the front lines of sickle cell advocacy, including community-based organizations (CBOs), independent patient advocates (IPCAs), and caregiver advocates, to share knowledge, collaborate, and shape the future of research, policy, and solutions. True to our motto, “Nothing For Us, Without Us,” this event ensures that the voices of those directly impacted remain at the forefront of every discussion and decision.
WHO WE ARE
The Sickle Cell Consortium, also known as the Sickle Cell Community Consortium (SC3), is a national, community-governed network committed to improving outcomes for individuals and families affected by sickle cell disease. We are led by the General Assembly of Patients, Caregivers, and Community-Based Organizations, which serves as our primary decision-making body and ensures that lived experience remains central to our direction and priorities. Our partnership includes junior and established domestic and international CBOs, independent patient and caregiver advocates, sponsored-patient organizations, and community partners. Together, we represent a unified collective voice dedicated to advancing equity, strengthening community infrastructure, and driving systems-level change.
WHAT WE DO
SC3 convenes and connects stakeholders across the sickle cell ecosystem to strengthen leadership, advocacy, and collaboration. We provide training and capacity-building support to community-based organizations, elevate patient and caregiver voices in policy and research discussions, and facilitate cross-sector dialogue with industry, government, payors, healthcare providers, and investors. Through national convenings, the General Assembly, and structured working groups, we identify shared priorities and mobilize coordinated action. Our work transforms the power of the patient voice into measurable progress in care access, research alignment, and community sustainability.
WHAT IS THE LEADERSHIP SUMMIT
The Leadership Summit is SC3’s flagship convening designed to strengthen the leadership, infrastructure, and collective strategy of the sickle cell community. Held annually, the Summit brings together patients, caregivers, community-based organizations, clinicians, researchers, and cross-sector partners for education, training, and priority-setting. It serves as a platform for CBO best practices, expert advocacy development, medical and research updates, and formal meetings of the General Assembly. The Summit is not only a conference, it is a structured space for decision-making, collaboration, and advancing the shared agenda of the sickle cell community.
LEADERSHIP SUMMIT FRAMEWORK
The 10th Leadership Summit serves as a milestone convening designed to strengthen the sickle cell community’s leadership pipeline, elevate community-based organizational (CBO) capacity, align stakeholder priorities, and advance coordinated community impact. The Summit is intentionally structured to achieve measurable outcomes through three key purposes:
- CBO Best Practices and Expert Advocacy Training
- SC3 Annual Business Meeting
- Convening the General Assembly for Patients, Caregivers, and Community-Based Organizations
01.
CBO Best Practices and Expert Advocacy Training
A dynamic blend of lectures, hands-on workshops, roundtable discussions, panels, and interactive strategy sessions—all designed to strengthen the development, sustainability, and impact of community-based organizations (CBOs) and independent patient/caregiver advocates.
This training will equip participants with practical tools, proven strategies, and real-world solutions to navigate the challenges of advocacy, leadership, and organizational growth.
02.
Updates & Discussions
A dedicated space for timely updates, critical discussions, and collaborative insights from government agencies, industry leaders, academic researchers, and community-driven initiatives. These sessions will ensure attendees stay informed about the latest developments shaping the sickle cell landscape while bridging the gap between decision-makers and the community. Participants will gain actionable knowledge and strategic insights to strengthen their advocacy, leadership, and organizational growth.
03.
Updates & Discussions
The General Assembly is the Sickle Cell Community Consortium's key decision-making body, uniting partner CBOs, patients, and caregivers to drive impactful solutions.
This year, an even year, we outline, define, and prioritize three new projects from the formal docket, as well as, advancing ongoing initiatives through:
-Progress Review – Assessing milestones from last year.
-Priority Refinement – Defining next steps for key efforts.
-Collaboration – Partnering with advocates, CBOs, and industry
2016
Year Started
4
Day Event
20+
Sessions
100+
Partners