Sickle Cell Consortium Hosts 7th Annual Leadership Summit
Sickle cell community leaders gather annually to convene the General Assembly of Patients, Caregivers, and Community-Based Organizations to identify and develop national community priorities; host expert advocacy and capacity-building training workshops; and provide medical, research, and legislative updates to leaders in the sickle cell space.
ATLANTA, March 20, 2023 (Newswire.com) - The Sickle Cell Consortium (SCCC) proudly announces the 7th Annual Leadership Summit and General Assembly of Patients, Caregivers, and Community-Based Organizations (CBOs), scheduled for March 23-27, 2023, at the Hilton Garden Inn — Buckhead in Atlanta, Georgia. The summit will bring together experts, advocates, and leaders from the sickle cell disease (SCD) community to discuss the latest developments and innovations in research, treatment, and advocacy. The Consortium will welcome the seven-seated General Assembly, which includes thirty-eight (38) domestic Community-Based Organizations, twelve (12) International CBOs, two (2) Junior CBOs, two (2) Community Partners, one (1) Sponsored Patient Organizations, fifty-seven (57) Independent Patient/Caregiver Advocate, and seven (7) Next Generation Advocates.
Sickle cell disease is a genetic blood disorder affecting millions worldwide, disproportionately impacting people of African descent. Despite its prevalence, SCD remains a relatively underfunded and under-researched disease, and patients often face stigma, discrimination, and inadequate access to care.
The SCCC Leadership Summit is the primary meeting for partners. This meeting focuses on training and best practices on 1. Effective advocacy in the rare disease space, and 2. Maintaining strong sickle cell CBOs. Partners of the Consortium identify and define community priorities.
The Leadership Summit will include:
1. CBO Best Practices and Expert Advocacy Training — Lectures, workshops, roundtable discussions, and panels all focused on supporting the development and sustainability of solid and practical CBOs and independent patient/caregiver advocates.
2. Consortium Annual Business Meeting — Reports from the 10 central infrastructure committees and review of all items placed on the Business Docket. All elections, addendums, and amendments occur during the Business Meeting.
3. Convene the General Assembly of Patients, Caregivers, and CBOs.
The General Assembly is the primary organ and decision-making body of the Consortium. Composed of representatives from all partner CBOs and 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 Summit is open to the general public and made possible with the generous support of Platinum Sponsor Vertex Pharmaceuticals and many others.
"We are excited to bring together some of the brightest minds and most dedicated leaders in the sickle cell community for this historic event," said Dr. Lakiea Bailey, SCCC Executive Director. "The SCCC Leadership Summit represents a unique opportunity to chart a path forward for the SCD community, grounded in science, equity, and patient-centeredness."
The SCCC Leadership Summit is open to all partners of the Consortium and to the public of the sickle cell community, including patients, caregivers, healthcare providers, researchers, advocates, and policymakers. Registration is now open at https://www.eventbrite.com/e/7th-sickle-cell-leadership-summit-general-industry-registrants-only-tickets-567199467877. For more information, visit https://www.sicklecellevents.org/2023leadershipsummit.
Source: Sickle Cell Consortium
