Rallying Support to Increase Lupus Research Funding

We rally support for lupus research by working to stimulate new federal funding and support for lupus research.

  • The Department of Defense Congressionally Directed Medical Research Program proposal for a lupus specific medical research program. The Department of Defense has allocated more than $12 million for research to date and legislation is pending that would create specific program exclusively for lupus research.
  • Federal Congressional Lupus Caucus: Working with our lupus champions in Congress, we helped establish the Congressional Lupus Caucus in the U.S. House of Representatives to support the urgent needs of people affected by lupus and the scientific community working to advance the science of lupus.
  • Major federal funding for the first national Epidemiology Lupus Study: Through our public policy initiatives, we secured more than $26.5 million for the National Lupus Patient Registry at the Centers for Disease Control and Prevention to determine the prevalence and incidence of lupus among  populations at risk for the disease, and to measure the burden of disease on individuals, families and society.
  • Federal Working Group to coordinate lupus activity among all federal agencies: We secured congressional support to establish the Federal Working Group on Lupus at the National Institutes of Health to exchange information and better coordinate the activities of all federal agencies with an interest in lupus.
  • National Lupus Public Health Agenda: LFA worked with the National Association of Chronic Disease Directors in collaboration with the Centers for Disease Control and Prevention, as well as leading lupus and public health advocates to develop the first-ever National Lupus Public Health Agenda to provide a roadmap to improving care and treatment of lupus.
  • Action Plan for Lupus Research: In 2014, we spearheaded efforts with the Congressional Lupus Caucus to update the 2007 National Institutes of Health lupus report. The result is the Action Plan for Lupus Research, issued by the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), to call attention to areas of scientific inquiry that may lead to more effective treatments and, eventually, cures.
  • Public awareness campaign to improve early diagnosis: We helped to secure more than $3 million in Congressional appropriations for the U.S. Department of Health and Human Services Office on Women’s Health (OWH) to launch an Ad Council public awareness campaign on lupus. The campaign has generated more than $70 million in earned and donated media placements.

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Our Government Relations & Advocacy Initiatives