Governance

Lupus ABC is led by two key governing bodies – the Research Committee (RC) and the Lupus Voices Council (LVC). With representatives from industry, academic, medical, and patient communities, as well as governmental agencies including the FDA, the RC sets priorities for the Consortium and defines projects that address these priorities. Incorporating input from LVC in its decisions, the RC oversees the progress of the projects to ensure their successful outcomes. Members will serve two-year terms.

The LVC is comprised of individuals living with lupus, their family members or care providers, and representatives of advocacy organizations. Through the LVC, Lupus ABC ensures that the perspectives of individuals with lupus are incorporated into the work of Lupus ABC, such as the impact of lupus on individuals with the disease, clinical trial participation, drug development priorities, and other relevant topics. LVC comprises up to 15 members who represent the diversity of people impacted by lupus with staggered two-year terms to ensure continuity.

The Executive Committee (EC) is a subcommittee of the RC that enables decision-making between the quarterly Research Committee meetings. It consists of up to 9 RC members with broad and balanced expertise that can effectively manage Lupus ABC action items arising between RC meetings.

Based on Lupus ABC strategic research priorities and consensus, the RC and the LVC empanel Working Groups (WGs) and oversee their progress. RC-empaneled WGs—comprising members with appropriate clinical and/or scientific expertise and, where appropriate, individuals with lupus—will focus on a specific clinical and/or scientific question or area. LVC-empaneled WGs—comprising members who are living with lupus or their care partners or advocates—will focus on areas where the patient voice can significantly enhance clinical, scientific, and/or regulatory considerations.