By: The Lupus Research Alliance  

With so much progress underway on every front, never has there been a Lupus Awareness Month that offers cause for more hope and celebration. The power of research is what delivered the three medications approved specifically for lupus. However, because lupus is so complex and affects each person so individually, more therapies are urgently needed.

Lupus is a chronic autoimmune disease that can affect any part of the body, causing widespread inflammation and tissue damage. While lupus can affect anyone, certain groups are affected more in the areas of disease severity and access to care. For example, nine out of 10 people diagnosed with lupus are women, often diagnosed between the ages of 15 to 45. Lupus is two to three times more common, and the symptoms tend to be more severe among people of color, predominantly affecting Black, Latino/a/x/e, Asian, and Indigenous people. In lupus, the immune system – meant to defend against infections – produces antibodies that mistakenly recognize the body’s own cells as foreign, prompting other immune cells to attack and potentially damage organs like the kidneys, brain, heart, lungs, blood, skin, and joints.

The Lupus Research Alliance Unifies the Community  
Putting people with lupus at the center of all we do, our mission at the Lupus Research Alliance is to drive the discovery and development of next-generation lupus diagnostics and curative treatments through innovative research and collaborations.

The Lupus Research Alliance is currently the largest nongovernmental, nonprofit funder of lupus research in the world. Our work spans the entire research spectrum from funding transformative discoveries in the lab and translational research to partnering with the biopharmaceutical industry on new therapies in development through Lupus Therapeutics (LT), the clinical research affiliate of the Lupus Research Alliance. LT hosted the 2024 LuCIN (Lupus Clinical Investigators Network) Community Meeting over World Lupus Day (May 10, 2024) and brought together contributors from across the lupus community. There, people with lupus and advocates joined industry representatives to discuss new projects that pave the way for more treatment options, particularly in the emerging area of engineered cell therapies for lupus. 

The word “Alliance” is in our name because it expresses our understanding that while no single organization can do this alone, together ManyOne Can, and are, taking steps to make a difference, while ensuring the voices and input of people with lupus are front and center.  

Giving a Voice to People with Lupus
The Lupus Research Alliance is the convener of the Lupus Accelerating Breakthroughs Consortium (Lupus ABC), the first-of-its-kind public-private partnership (PPP) uniting individuals with lupus and their advocates, industry, clinicians, researchers, and government stakeholders to collaboratively identify and pursue the most effective ways to accelerate the development of urgently needed personalized treatments for people with lupus. Last month, the group met for its first anniversary meeting to share progress and expanded collaboration with the U.S. Food and Drug Administration (FDA) Center for Biologics and Evaluation (CBER) division. With hundreds in attendance, the varied perspectives and priorities of people living with lupus were powerfully heard.  

Spreading Understanding and Inspiration  
Continuing momentum, Lupus Awareness Month 2024 is the time we aim to arm our community and broaden our ranks to spread awareness of this challenging disease with tools that educate, engage, and empower. 

Throughout the month, the Lupus Research Alliance is sharing messages of hope and inspiring stories to help educate the world about lupus, spark others to get involved, and unite a growing community behind our common cause. Everyone is encouraged to utilize the  Lupus Awareness Month Social Media Community Toolkit. The more people appreciate what it really means to live with lupus, the faster we will deliver a future where it no longer exists.

Looking ahead, Lupus Therapeutics will be hosting a live webinar (June 3) for individuals living with lupus about cell therapies and how they work, why there is currently so much focus on these potential treatments, the safety and current efficacy data, as well as considerations for those interested in learning more. Lupus Research Alliance funded early research that identified the potential of CAR-T cells for treating lupus, and currently Lupus Therapeutics is collaborating with a number of pharmaceutical partners on evaluating CAR-T cell therapies in clinical trials. Click here to register for the webinar.

Visit our website to learn about the many ways individuals and like-minded organizations can help by participating in the research process, amplifying disease awareness, advocating for lupus research funding, and supporting our research efforts through donations. 

 The Lupus Research Alliance is a member of the National Health Council. For more information on NHC membership, please email membership@nhcouncil.org.