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.
What Makes This Summit Different?
The Leadership Summit is a hands-on, workshop-driven event where attendees do more than listen—they actively participate in problem-solving, leadership training, and skill-building to strengthen their impact in the sickle cell community.
What to Expect:
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Leadership & Advocacy Training – Strengthen your leadership skills with expert-led workshops on policy, crisis communication, and patient-centered advocacy.
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Workshops on AI & Digital Innovation – Learn how to use AI and digital tools to enhance your advocacy and outreach efforts.
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Sustainable Fundraising & Sponsorship Strategies – Discover innovative ways to secure funding and build long-term partnerships.
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Wellness & Burnout Prevention for Leaders – Develop strategies to sustain your energy, avoid burnout, and create a culture of self-care in your work.
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Emergency Preparedness for Communities & Caregivers – Equip yourself with the tools to prepare for crises and protect your community.
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Collaboration Across Sectors – Connect with industry leaders, policymakers, and researchers to drive meaningful progress in sickle cell advocacy.
Each session includes interactive workshops, real-world exercises, and practical takeaways—ensuring that attendees leave with the tools to implement what they’ve learned in their organizations and communities
This meeting serves three purposes:
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.
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.
Convene the General Assembly of Patients, Caregivers, and CBOs
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, without a formal docket, the focus is on advancing ongoing initiatives through:
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Progress Review – Assessing milestones from last year.
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Priority Refinement – Defining next steps for key efforts.
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Collaboration – Partnering with advocates, CBOs, and industry leaders to implement solutions.
General Assembly II, G2
This meeting is followed in October by the General Assembly, II (The G2), where the SC3 Annual Business Meeting is conducted.
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.
2016
Year Started
4
Day Event
20+
Sessions
100+
Partners
THANK YOU SPONSORS!
