NIH Action Plan for Lupus Research Presented at Congressional Briefing

WASHINGTON, DC – March 15, 2016 – A new lupus research plan to guide the nation’s scientific community toward a cure was presented today in a special Congressional briefing held on Capitol Hill. The new plan is critically important to the 1.5 million Americans living with the devastating autoimmune disease lupus.  Today’s briefing was presented by the Alliance for Lupus Research (ALR) and the Lupus Research Institute (LRI) in conjunction with the Congressional Lupus Caucus, a bipartisan organization of Members of the House of Representatives concerned about the disease.

The new National Institutes of Health (NIH) Action Plan for Lupus Research was developed under the direction of the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) on behalf of the NIH. This comprehensive roadmap builds upon decades of NIH research efforts, yielding a wealth of new information toward improving understanding of lupus.

One of four co-chairs of the Congressional Lupus Caucus, Representative William Keating (D-MA) described, “Autoimmune diseases like lupus are very difficult to diagnose and treat.  The Caucus is proud of what we have achieved, and we are on the cusp of seeing great breakthroughs. We are making progress that must keep going.”

His colleague and Caucus co-chair Representative Tom Rooney (R-FL) noted, “Lupus patients should be hopeful that this new plan will bring positive changes to their lives. Our Caucus thanks the Lupus Research Institute and the Alliance for Lupus Research for working with us to organize this briefing to highlight this plan and the challenges ahead to finding a cure for lupus.”  

“Continuing to advance research is a critical goal of the Congressional Lupus Caucus,” said Caucus co-chair Representative Ileana Ros-Lehtinen (R-FL). “The new Action Plan represents a path lined with possibilities for those living with lupus, including my step-daughter. Through her experiences, our family knows how hard living with lupus can be, so I am committed to helping improve the quality of life for those suffering from this challenging disease.”

Discussing how this new research plan will help provide better and safer treatments for the lupus community, the renowned group of speakers also included:

  • Stephen I. Katz, MD, PhD, Director, National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) at NIH
  • Robert H. Carter, MD – Deputy Director, NIAMS
  • Stefania Gallucci, MD – Lupus researcher and Associate Chair of Microbiology and Immunology, Temple University’s Lewis Katz School of Medicine
  • Molly McCabe – Lupus patient and Co-founder, Molly’s Fund Fighting Lupus
  • And a video message by Francis S. Collins, MD – Director, National Institutes of Health


About Lupus

Lupus is a chronic autoimmune disease that causes inflammation and tissue damage to any organ system in the body. The health effects of lupus include heart attacks, strokes, seizures, organ failure, and possible death.

About the Alliance for Lupus Research

The Alliance for Lupus Research (ALR) is a national voluntary health organization dedicated to finding better treatments and ultimately preventing and curing systemic lupus erythematosus (SLE, or lupus). The organization is based in New York City and chaired by Robert Wood Johnson IV. Since its founding in 1999, the ALR has given more money to lupus research than any non-governmental agency in the world. To date the ALR has committed nearly $100 million to fund the most innovative and aggressive research into the cause, prevention and cure of lupus.  The board of directors funds all administrative and fundraising costs, allowing one hundred percent of all donations from the public, and the proceeds of our signature grassroots fundraising program, Walk with Us to Cure Lupus, to go directly to support research programs. More information can be found at

About the Lupus Research Institute

The Lupus Research Institute (LRI), the world’s leading private supporter of novel research in lupus, demonstrates the power of innovation to propel scientific solutions in this complex autoimmune disease. Founded in 2000 by families and shaped by leading scientists, the LRI has delivered many of the decade’s most pivotal scientific breakthroughs to transform treatment and advance toward prevention and a cure.  The LRI has generated over $200 M for lupus research; an investment of $50 million has multiplied four-fold primarily with follow-on funding primarily from the National Institutes of Health.  Learn more at