Research Impact
The Lipedema Foundation scientific strategy is focused on partnering with the Lipedema research and patient communities to identify and overcome barriers to advancement of Lipedema care. Guided by our Research Roadmap, our focus is on understanding the underlying biology of Lipedema to support earlier diagnosis, advance treatment options, and improve the lives of people living with Lipedema.
We are supporting investigation into many aspects of the condition. Ongoing research includes studying the tissues, genes, and proteins involved in both the onset and persistence of Lipedema, hormonal profiles of people with Lipedema, and imaging technologies for diagnosis, among many others. Just as importantly, we listen closely to people living with Lipedema. Their experiences help shape the questions we ask and guide the science toward discoveries that can make a real difference in people’s lives.
Developing and Expanding the Lipedema Scientific Community
The Lipedema Foundation is also actively working to expand and foster the talented pool of dedicated scientists and clinicians who bring their expertise to address the challenges of this condition. We provide funding, tools, and collaboration to unite Lipedema researchers, clinicians, and patients around focused progress in Lipedema. These efforts have 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. We reached out to our community - patients, researchers and clinicians - and began work on two important documents to understand both the state of Lipedema research and the future of research. Development of these two documents has guided our research strategy through to today.
Listening to Scientists
In 2017, we launched the Lipedema Foundation Award Program. We hired our first Chief Scientific Officer and awarded 16 grants to fund researchers across the globe to pursue projects with the potential to significantly advance diagnosis and treatment.
Learning from Patients
In 2019, we launched the Lipedema Foundation Registry, where patients’ life experiences with Lipedema could be recorded and directly incorporated into the research enterprise.
Expanding the Research Community
In 2021 and 2022, we funded 26 projects led by 49 investigators in the United States, Europe, Great Britain and Australia, 45 of which were first-time awardees. This led to the largest Lipedema Foundation Retreat to date in 2022 with researchers, clinicians and patients attending from 9 countries and 4 continents.
New Resources for Lipedema
In 2022, we developed two great new resources for Lipedema Researchers and Patients. Legato, The Lipedema Library, organizes scholarly works, functioning as digital research infrastructure. This searchable database makes the latest scientific data accessible to researchers and people with Lipedema to inform future studies and care. Legwork, A Clinical Study Finder, is designed to help people with Lipedema and related conditions find studies to support their own care and advance the care of others.
Research Roadmap
In 2023, we published the Lipedema Foundation Research Roadmap. The Research Roadmap incorporates input from researchers, patients, surgeons, physicians, therapists, and funders to create recommended actions to grow and strengthen research. We also launched the Research Idea Database, a portal that invites anyone to submit a question or suggestion about Lipedema - from basic science to diagnosis or treatment.
Advancing the field through Biobanking
In 2024 and 2025, two Lipedema biorepositories (or Biobanks) began collecting samples. Biobanks are tools that help scientists draw correlations between health data and biological samples. In 2024, Vanderbilt University Medical Center (VUMC) banked their first samples into the first-ever Lipedema biorepository. In 2025, we launched the LF Lipedema Biobank at the Fat Disorders Resource Society (FDRS) Conference. We hosted a Live Research event that brought together researchers, clinicians, and individuals living with Lipedema to support research in real time. By combining biological samples with detailed data on health, symptoms, and lifestyle, scientists can reveal previously elusive connections between health factors and make useful discoveries. With this kind of resource, researchers can ask new kinds of questions—and find better answers.
Leaning into Tomorrow
Despite challenging times, the Lipedema Foundation continues to make bold choices that create a richer information environment around Lipedema research. 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.