Research Impact

The Lipedema Foundation research strategy is focused on partnering with the Lipedema research and patient community to identify and overcome specific barriers to advancement in Lipedema care. Guided by our research roadmap, our present focus is to support earlier diagnosis through the development of a portfolio of biomarkers and measurement techniques that will shorten the journey to diagnosis for patients, and by simplifying diagnosis open a new era of biological research into Lipedema.  

To do this we attack many aspects of the condition. We study the many tissues and genes that contribute to the environments where Lipedema first appears, and how these may be leveraged to improve the science of Lipedema. But we are also committed to understanding how listening to patients can inform the research that leads to advancement.  

The Lipedema Foundation is separately focused on expanding the workforce of committed scientists and clinicians interested in bringing their skills to solve issues related to this condition. By working in close collaboration with these communities we are building the ecosystem of driven research to eliminate Lipedema.

Developing and Expanding the Lipedema Scientific Community

The Lipedema Foundation engages researchers to develop and expand the Lipedema scientific community. To do this we bring the funding, tools, and collaboration that unites researchers, clinicians, and patients around focused progress in Lipedema. In doing so, we’ve helped transform how we and others think about the science of Lipedema.

Leading Research

When the Lipedema Foundation launched in 2015, it immediately became the world's largest driving force behind Lipedema research. In 2017, we created the first actionable research roadmap, collaborating with patients, researchers, clinicians and established leaders in philanthropic research strategy. Guided by that roadmap, the Foundation now annually supports more than 20% of the published discoveries. With the launch of its fellowships, biobank, and genetics studies, the Foundation set the stage for leading advancements in detection and treatment.

Listening to Scientists

In 2017, the research program expanded to direct research and also receive and respond to the needs of patients and researchers. That year marked the launch of the flagship Lipedema Foundation Award Program, which sources research ideas from the investigator community and awards funding to pursue projects with the potential to significantly advance diagnosis and treatment. By 2021, data generated under this program had led to the first ever US National Institute of Health grant for Lipedema.

Learning from Patients

2018 marked the launch of the Lipedema Foundation Registry, which created an information resource where patients’ life experiences with Lipedema could be counted and directly incorporated into the research enterprise.

Leaning into Tomorrow

Despite challenging times, the Lipedema Foundation continues to make bold choices that create a richer information environment around Lipedema. By elevating patients, science, and scientists who have made Lipedema their passion, we will continue our legacy of high impact discovery on behalf of Lipedema patients