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 by developing 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 address many aspects of the condition. We study the various tissues and genes that contribute to the environments where Lipedema first appears, and how these factors can be leveraged to advance the science of Lipedema. We’re also committed to understanding how listening to patients can inform Lipedema research and drive meaningful progress.
The Lipedema Foundation is also focused on expanding the workforce of dedicated scientists and clinicians who are bringing their expertise to address the challenges of this condition. By working closely with these communities, we’re building a collaborative research ecosystem committed to eliminating 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 Lipedema researchers, clinicians, and patients around focused progress in Lipedema. In doing so, we’ve helped transform how we and others think about the science related to the condition.
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 Lipedema Research Roadmap, collaborating with patients, researchers, clinicians and established leaders in philanthropic research strategy. Guided by that roadmap, the Foundation now supports more than 20% of the published discoveries annually. 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 Lipedema research while also receiving and responding 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 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.
Advancing the field through Biobanking
In 2023, Vanderbilt University Medical Center (VUMC) announced plans to create the first-ever Lipedema biorepository. Scientific understanding begins in research laboratories, which need access to a reliable source of biosamples (also called biological samples) for study. Although Lipedema is not a rare disease, it is rarely diagnosed. Therefore, access to biosamples with reliable associated clinical information has been difficult. The VUMC Lipedema Biorepository, funded by LF, will collect, catalogue, store, and distribute tissue, blood, urine, and other biosamples to enable Lipedema researchers to conduct critical laboratory studies. This important initiative will expand the scientific understanding of Lipedema.
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 research and discovery on behalf of Lipedema patients.