May is both Lupus Awareness Month and Women’s Health Month. And the timing is apropos as lupus affects female patients at a far higher rate than it affects men, though researchers are still not sure why.
In observation, Bio.News sat down with the Lupus Foundation of America (LFA), which has led the fight to improve the lives of people affected by lupus through groundbreaking research, patient advocacy, education, and support for nearly 50 years. We discuss some of the persistent challenges facing lupus patients, the latest advances in research and treatment, and why greater awareness remains critical to improving outcomes for the estimated 1.5 million Americans living with lupus.
1. What is the Lupus Foundation of America, and why was it founded?
The Lupus Foundation of America (LFA) was founded in 1977 when leaders from more than 20 independent local and statewide lupus organizations recognized the need to raise awareness of lupus and place the disease on the nation’s healthcare agenda. For nearly five decades, LFA has grown into the only national organization dedicated exclusively to solving the complex challenges of lupus.
LFA’s mission is to improve the quality of life for all people affected by lupus through research, education, support, and advocacy. The organization is focused on reducing the time to diagnosis, expanding access to safe and effective treatments, and increasing the availability of care and support services for people living with lupus. In 2016, the Foundation co-founded the World Lupus Federation, uniting more than 200 lupus organizations worldwide around a shared vision of a life free from lupus.
Today, LFA continues to be the premier lupus patient advocacy organization both nationally and globally, leading efforts to increase public and private investment in lupus research, advance safer and more targeted therapies, and improve awareness and understanding of lupus among patients, healthcare professionals, and the public. Working with tens of thousands of lupus advocates across the nation, we’ve generated more than $795 million in federal research funding for lupus in the last five years alone. Our research portfolio spans basic, translational and clinical research, and has contributed to nearly every significant lupus research advancement. Every day, we provide caring support and answers through hundreds of trustworthy resources and programs that cover every aspect of lupus.
2. May is Lupus Awareness Month. How is LFA raising awareness, and what are some common misconceptions about the barriers patients with Lupus face?
As the national convener of Lupus Awareness Month, LFA brings communities together each May to raise public understanding of lupus. The nationwide and global effort raises awareness of the signs and symptoms of lupus, amplifies the real-life stories of the day-to-day impact of living with lupus, and raises funds to support lupus research, education programs and support services.
This year’s Make Lupus Visible campaign is reaching hundreds of thousands of people, and also features the newly updated KNOW Lupus Quiz. This interactive tool to educate the public engages thousands every week, helping them learn more about lupus in a fun and memorable way.
3. Lupus disproportionately impacts women. What do we know about the underlying biology and what is driving these gender differences?
Lupus is a complex and debilitating chronic autoimmune disease where the immune system is unable to tell the difference between healthy tissue and foreign invaders. This can result in inflammation, debilitating pain, and damage to any organ system in the body. The symptoms of lupus often disrupt daily life and may lead to serious—and sometimes life-threatening—complications, including lupus nephritis (lupus-related kidney disease), which affects up to 60% of people with lupus and can result in kidney failure.
An estimated 1.5 million Americans are living with lupus. While lupus can affect anyone, nine out of 10 people living with lupus are women, most often diagnosed during their childbearing years. The disease also disproportionately affects women from certain racial and ethnic backgrounds, including Black/African American, Hispanic/Latino, Asian American, and Pacific Islander communities, who are 2–3 times more likely to develop the disease than Caucasian women.
Researchers are still seeking answers to this question and aren’t quite sure why lupus is more common in women. However, they think that differences in our genes and hormones—chemical messengers that deliver messages from the brain to the body—may play a role. Some studies show that estrogen contributes to the development of lupus and makes it more severe.
4. LFA is playing a key role in accelerating scientific breakthroughs. What are some of your key areas of focus and what is the next frontier in Lupus treatments?
Since its inception, LFA has funded hundreds of researchers at medical institutions across the United States and around the world. LFA supports innovative, high-impact research aimed at accelerating progress and improving quality of life for people affected by lupus. By challenging outdated approaches and investing in promising science, the organization works to uncover the causes of lupus, better understand disease progression, and advance the search for safer, more effective treatments and ultimately a cure.
Recognizing that many existing therapies still fail to meet patient needs, LFA created RAY (Research Accelerated by You)®, a patient registry designed to place the experiences of people with lupus and their caregivers at the center of research to help deepen the understanding of this complex disease and accelerate the development of treatments for people living with lupus. With thousands of participants, RAY has become the world’s largest lupus patient data repository. Participants contribute through surveys, focus groups, and advisory panels that help shape drug development and patient-centered therapies. The platform also promotes diverse representation in research, reflecting the broad range of experiences across race, ethnicity, disease type, and disease severity. In addition, RAY has supported education and awareness efforts for nearly 20 clinical trials focused on CAR-T therapy, systemic lupus erythematosus (SLE), lupus nephritis, discoid lupus erythematosus, and related conditions.
Improving pregnancy outcomes for women with lupus has also been a major research priority. With donor support, LFA funded the IMPACT Study (IMprove Pregnancy in APS with Certolizumab Therapy), which evaluated whether adding certolizumab to standard treatment could reduce pregnancy risks for women with lupus and/or antiphospholipid syndrome (APS), a disorder associated with abnormal blood clotting. Recently, the study completed its Phase II research and produced encouraging results: 93% of participants with healthy pregnancies delivered healthy babies, compared with a 38% survival rate in participants’ prior pregnancies. These findings offer renewed hope for women with lupus and their families. In February 2025, the MiSLE Phase II clinical trial, which studies mesenchymal stromal cells as a potential lupus treatment, reached a major milestone by completing enrollment. Co-funded by LFA and NIH, this study is advancing a promising new approach to lupus treatment.
LFA also continues to prioritize strengthening the future lupus research workforce, through our Gina M. Finzi Memorial Student Summer Fellowship and the Gary S. Gilkeson Career Development Award, which we present each year.
Today, LFA’s investments in research are helping reshape the standard of care for lupus. Recently, LFA funded 12 new studies focused on understanding symptoms such as fatigue and cognitive impairment, advancing treatments for immune and kidney complications, and improving self-management and medication adherence. LFA also continues to lead efforts in pediatric lupus research and in studies focused on predicting and preventing the disease.
Advocacy for lupus research remains a central focus of LFA’s work. Each year, LFA plays the leading role advocating for federal funding for lupus research and for implementation of federal lupus research and awareness programs. Together with advocates and supporters nationwide, LFA helps secure millions in federal funding for lupus research and education programs while advancing policies aimed at expanding access to care and reducing treatment costs for people living with lupus. LFA collaborates with federal agencies and coalitions to advance lupus priorities at the National Institutes of Health, Centers for Disease Control and Prevention, Department of Defense, Office of Minority Health, Centers for Medicare & Medicaid Services, and the Food and Drug Administration.
Due to the efforts of the LFA and our decades of work, public awareness of lupus has grown significantly over the years, helping foster greater understanding of the disease and its impact. Through national campaigns, global partnerships, and advocacy initiatives, the Lupus Foundation of America continues to drive awareness because earlier diagnosis, compassionate care, and better treatment outcomes depend on greater public understanding.
To learn more about Lupus and the work that the Lupus Foundation of America is doing, visit HERE.
