lupus research alliance (new york city)

About the Lupus Research Alliance

The Lupus Research Alliance is the world’s leading private funder of lupus research. Established in 2016 – from the merger of the Alliance for Lupus Research, the Lupus Research Institute, and the S.L.E. Foundation – the Lupus Research Alliance was created to improve treatments for lupus while advancing toward a cure. This effort includes raising funds and advocating on behalf of the lupus community in the public policy arena. We believe that scientific research is the most powerful way we can improve the lives of people living with lupus, today and over the long term. By pushing the limits of scientific exploration and shepherding new discoveries into potential treatments, we aim to seize every opportunity that will help ease the burden of people living with this difficult disease.

Accelerating breakthrough lupus discoveries

Bringing together the lupus community nationwide

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because the Lupus Research Alliance board of directors funds all administrative and fundraising costs

Lupus Accelerating Breakthroughs Consortium Announces Expanded Partnership with U.S. FDA at First Anniversary Meeting

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BETHESDA, MD – [April 16] The Lupus Research Alliance (LRA), founder and administrator of the Lupus Accelerating Breakthroughs Consortium (Lupus ABC), announced today at the Consortium’s first anniversary meeting an expanded partnership with the U.S. Food and Drug Administration (FDA) with the inclusion of the Center for Biologics Evaluation and Research (CBER). The addition of CBER to Lupus ABC will enhance the Consortium’s focus on engineered cell therapies, a promising new area in lupus therapeutic development. Lupus ABC was launched in collaboration with the FDA Center for Drug Evaluation and Research (CDER) in March 2023.

Lupus ABC is a 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.

The field of engineered cell therapies in lupus is an exciting and rapidly evolving area of research of significant interest to individuals living with lupus. While questions of long-term durability, safety and effectiveness continue to be examined, early clinical results with CAR-T cells in lupus offer much promise, and hope for a potentially curative treatment approach. CBER’s participation in Lupus ABC will help facilitate the creation and deployment of patient-focused tools and approaches in the development of CAR-T cell and other engineered cell therapies and ensure a focus on the most pressing questions for advancement of the field.

As keynote speaker at the Lupus ABC meeting, Peter Marks, M.D., Ph.D., Director of CBER commented, “Patients with lupus experience many debilitating manifestations and require lifelong immunosuppression. CBER shares the excitement and enthusiasm around the transformative potential of emerging technologies such as CAR-T therapies to address an unmet medical need for patients with this serious, potentially life-threatening condition. We look forward to collaborating with Lupus ABC to shepherd the product development plans in a safe manner.”

“We are delighted to have the Center for Biologics Evaluation and Research join Lupus ABC at this important juncture in the development of engineered cell therapies for lupus to help us accelerate their clinical evaluation,” said Teodora Staeva, Ph.D., Vice President, and Chief Scientific Officer, LRA. “CBER’s engagement, along with that from people with lived lupus experience, industry, clinicians, and other federal partners, will provide urgently needed guidance for the field to enable improved lupus outcomes. We are grateful to both CBER and CDER for their commitment to this important effort.”

Since its establishment less than a year ago, Lupus ABC has made robust progress through building a strong community of more than 40 member groups and launching three projects focused on different outcome measures for lupus trials— including Treatment Response Measure for SLE (TRM-SLE), Cutaneous Lupus Erythematosus Disease Area Severity Index (CLASI), and Lupus Patient-Reported Outcomes. The fourth project, centering on CAR-T cells, will include essential representation from CBER. Importantly, the voices of people living with lupus were considered in establishing each of the Lupus ABC projects and will continue to be central to the activities moving forward.

Lupus is a complex, potentially life-threatening autoimmune disorder that disproportionately impacts women and communities of color. Lupus can affect the joints, skin, brain, lungs, kidneys, and blood vessels, causing widespread inflammation and tissue damage in the affected organ. A heterogenous disease, lupus affects each person differently and its effects can change over time, making it one of the most difficult diseases to diagnose and treat. Black/African American, Native American, Hispanic/Latino and Asian populations are two to three times more likely than white Americans to be diagnosed with lupus.

About Lupus ABC The Lupus Accelerating Breakthroughs Consortium (Lupus ABC) is a public-private partnership (PPP) that includes the U.S. Food and Drug Administration (FDA) and other key lupus stakeholders, dedicated to accelerating the development of safer and more effective lupus therapies. Lupus ABC convenes regulators, other government representatives, drug developers, academics, patient advocacy groups, and professional societies to collaboratively develop and implement strategies that tackle the most pressing challenges in lupus drug development in a pre-competitive forum. The direction and priorities of the Lupus ABC are determined with input from its members. Lupus ABC is managed by the Lupus Research Alliance. For more information, visit LupusABC.org .

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The lupus research alliance walk with us to cure lupus takes off at the intrepid museum.

NEW YORK , Oct. 20, 2023 /PRNewswire/ -- Thousands of supporters will join together Saturday, October 21 at the Intrepid Museum (formerly called the Intrepid Sea, Air and Space Museum) to celebrate the 20 th Anniversary of the Lupus Research Alliance (LRA) 2023 New York City Walk with Us to Cure Lupus.   Registration remains open through Walk Day at www.lupuswalknyc.org.

While the well-attended annual event is free, donations by Walkers and corporate sponsors such as GSK, Hospital for Special Surgery, Northwell Health, NFL Foundation, BTIG, Genentech, Aurinia, KPMG, RPW, NYU Langone, Columbia University Irving Medical Center and Montefiore Health System have already raised nearly $300,000 for lupus research as well as public awareness of the serious and commonly misdiagnosed autoimmune disease. That number is still climbing as Walkers continue to fundraise for lupus research.

The New York City Walk will also livestream on Instagram Live on LRA's Instagram  starting at 9:00 AM EST for the LRA's Virtual Walk event, as well as for the community who can't attend the Walk at the Intrepid Museum.

What the Walk Has Meant to People with Lupus The Walk program connects people at live events as well as online, building a dedicated national and even international community that passionately believes in the power of research to find the cure. To date, the NYC Walk has raised over $11 million to fund the breakthroughs behind the development of more than a dozen investigational therapies for lupus. And the LRA's clinical research affiliate, Lupus Therapeutics is collaborating with several biopharmaceutical companies to help conduct clinical studies of many potential therapies in development, including emerging cell therapy approaches like CAR-T, a potential curative treatment approach.

"It is a promising time in lupus research with two new medications approved for lupus in the last two years and many more exciting therapeutics in the development pipeline, many of which were enabled by LRA's early research," said Albert T. Roy, LRA President and CEO. "However, because every experience with the disease is so personal, more treatments are needed to allow every person living with lupus to become the best versions of themselves."

Because the LRA's Board of Directors covers all administrative and fundraising costs, 100 percent of these donations go directly to lupus research programs. Visit www.lupuswalknyc.org  or Email [email protected]  for more information about the event.

Joining the Walk with Us to Cure Lupus  program to raise funds is just one way to contribute to the lupus cause. LRA asks the lupus community to join its ManyOne Can campaign, inviting each person living with lupus or someone who simply cares to become one of the Many who are making a difference in advocating for more government research funding, educating others about lupus to improve early diagnosis, or taking part in clinical research. No one person or organization can conquer lupus alone, but together ManyOne Can!

About Lupus Lupus is a chronic, complex autoimmune disease that affects millions of people worldwide. More than 90 percent of people with lupus are women, often striking during the childbearing years of 15-45. Blacks/African Americans, Hispanics, Asians, and Native Americans are at two to three times greater risk than Caucasians for developing lupus. 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 such as the kidneys, brain, heart, lungs, blood, skin, and joints.

About the Lupus Research Alliance The  Lupus Research Alliance  is the largest non-governmental, non-profit funder of lupus research worldwide. The organization aims to transform treatment by funding the most innovative lupus research, fostering diverse scientific talent, and driving discovery toward better diagnostics, improved treatments and ultimately a cure for lupus. Because the Lupus Research Alliance's Board of Directors funds all administrative and fundraising costs, 100% of all donations goes to support lupus research programs.

About Lupus Therapeutics Lupus Therapeutics , the clinical research affiliate of the Lupus Research Alliance, aims to accelerate the development of curative treatments for all patients living with lupus. Lupus Therapeutics collaborates with academic institutions, biotechnology and pharmaceutical partners through the unprecedented Lupus Clinical Investigators Network (LuCIN) to drive rapid and meaningful progress in the treatment of lupus patients. The organization elevates the patient voice, engages community stakeholders, and strives for representation of the diverse lupus community in the clinical research process with the most innovative and renowned experts throughout North America .

View original content to download multimedia: https://www.prnewswire.com/news-releases/the-lupus-research-alliance-walk-with-us-to-cure-lupus-takes-off-at-the-intrepid-museum-301962761.html

SOURCE Lupus Research Alliance

Let’s discover the next breakthrough in lupus clinical research, TOGETHER

People with lupus should have faster, more equitable access to safe and effective therapies. We’re on a mission to advance lupus clinical research, and with your help, we can make it happen sooner.

Accelerating Progress for the Lupus Community

As the clinical research accelerator arm of  Lupus Research Alliance , we partner with biopharmaceutical companies, clinical investigators, and community organizations to improve the clinical research process. Our efforts have one ultimate goal – ensuring the lupus community has more therapies that better address the unique ways lupus can affect individuals.

Driving Equitable and Inclusive Patient-Focused Research

Integrating the voices of patient peer advocates and lupus experts into every phase of the clinical research process is vital. To achieve this, we first need to eliminate the fundamental barriers preventing members of the lupus community from getting involved, particularly those from underrepresented groups. That’s why we’re spearheading several initiatives to improve access to clinical trials and increase participation rates among diverse communities, including  Project CHANGE  (Community-based Health Action Network to Generate trial participation and Eliminate disparities) and our  PALS program  (Patient Advocates for Lupus Studies).

Catalyzing Lupus Clinical Research

We help move research forward faster with our suite of medical and scientific consulting services for biopharmaceutical companies and our expansive, proprietary network of clinical trial sites at leading academic research centers throughout North America, known as our Lupus Clinical Investigators Network (LuCIN). Through LuCIN, we’re able to tap into the expertise of more than 200 experienced clinician-scientists focused on lupus research to help treat more than 25,000 people living with lupus.

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Mission Statement:

The Lupus Research Alliance unites the global lupus community in bold determination to free the world of lupus through the power of science. We will transform the lives of people affected by lupus as we welcome and embrace a new scientific era, pioneer innovation, push the frontiers of knowledge, enlist diverse new scientific talent, and lead the drive to new treatments, prevention and cure. 

The Lupus Research Alliance (LRA) is the world’s leading non-governmental, non-profit funder of lupus research. Over the past 20 years, the LRA has invested over $220 million in lupus research in more than 525 research and clinical studies. More recently, the LRA established an affiliate organization, Lupus Therapeutics (LT), which is responsible for the coordination, conduct and management of a North American-based clinical trial consortium, the Lupus Clinical Investigators Network (LuCIN). LT through LuCIN is currently conducting 9 Phase I through III clinical trials.

The Lupus Research Alliance unites the global lupus community in bold determination to free the world of lupus through the power of science. We will transform the lives of people affected by lupus as we welcome and…

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Location & Contact

• 646.884.6000
• [email protected]
• 270 Madison Ave, New York, NY 10016, USA Suite 300

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