The Summit is the primary meeting of the Sickle Cell Community Consortium. Normally, every March all Consortium partners travel to Atlanta Georgia to participate in the Leadership Summit and to convene the annual General Assembly of Patients, Caregivers and CBOs.
This meeting serves three purposes:
CBO Best Practices and Expert Advocacy Training
roundtable discussions and panels all focused on supporting the development and sustainability of strong, effective CBOs and independent patient/caregiver advocates.
Reports from the 10 main infrastructure committees and review of all items placed on the Business Docket. All elections, addendums and amendments occur during the (Partners Only)
Convene the General Assembly of Patients, Caregivers, and CBOs
The General Assembly is the primary organ and decision-making body of the Consortium. Comprised of representatives from all partner CBOs, as well as, independent patients/ caregivers, this group identifies and prioritizes problems, needs, and gaps in the sickle cell community, and then works collectively with other partnered groups to define and execute mutually beneficial and sustainable solutions.
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.