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Lupus Federal Working Group

Maximizing the impact of federal lupus research dollars

As more federal funding began to flow to lupus research in the early 2000s, Congress tasked the National Institutes of Health (NIH) with establishing a way to ensure they were maximizing the impact of every dollar. In 2003, the NIH's National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) launched the Lupus Federal Working Group.

The Lupus Federal Working Group brings together stakeholders with an interest in lupus, including government agencies and nonprofit organizations, to share information and coordinate the activities of the federal agencies involved in lupus care and research. 

The need for collaboration among federal agencies has grown since the Working Group was established - at NIH alone there are now 16 different institutes studying lupus. The Department of Defense, Centers for Disease Control and Prevention, and Office of Minority Health are all involved in lupus research and participate in the Working Group.

Robust annual funding for the National Institutes of Health allows the Lupus Federal Working Group to pursue its mission. 

The Lupus Foundation of America has participated in the Working Group since it was founded, and we continue to provide strategic direction and input.

Action Plan for Lupus Research

In early 2015, we worked with the Congressional Lupus Caucus to request an update to a 2007 NIAMS and Working Group report, The Future Directions of Lupus Research. The result was the Action Plan for Lupus Research. This report identified opportunities to increase scientific understanding of lupus, focusing on validating lupus biomarkers and analyzing health disparities.

Dr. Gary Gilkenson
Great progress could occur with increased and dedicated federal research funding efforts, strong partnerships across institutions, and additional public and private partnerships. The Action Plan for Lupus Research will help to prioritize and increase progress in lupus research.
Dr. Gary Gilkenson
Lupus Foundation of America Medical-Scientific Advisory Council