The Lipedema Foundation was built on a simple premise: funding the right research, done by the right scientists, is the fastest path to answers for people living with Lipedema. Over 11 years, that commitment has produced over $13.6 million in research investment, partnerships with 55 institutions across 10 countries, and 74 publications advancing our understanding of this disease from adipose biology and lymphatic involvement to pain mechanisms and the role of the immune system.
Today, we are announcing the next chapter: LF is now initiating and managing some of its own research projects.
Why we're doing this
This is not a change in direction; it is an expansion of what we've been doing. External grant funding remains central to our mission. However there are areas of research which don't fit neatly into our Request for Proposal model.
High-risk, high-reward science
Some of the most important foundational studies require funding, samples, and coordination that go beyond what any individual lab or investigator can provide. Some are too resource-intensive or speculative for conventional academic funding streams. LF is well positioned to take on that work.
Filling gaps faster
Our 2023 Lipedema Research Roadmap identified critical areas in Lipedema that remain poorly characterized. Running our own projects lets us address those gaps directly, on a timeline that academic structures rarely allow.Building shared resources
Internally led projects are designed to generate tools, datasets, and standards that external researchers can use. We are expanding the infrastructure of the entire field, not just our own work.
How we select and oversee projects
LF-initiated projects are reviewed by our Scientific Advisory Committee, which evaluates proposed directions, provides recommendations on the proposals, and suggests which projects are best suited to LF’s capabilities. Project selection is driven by our strategic research roadmap, ongoing literature review, input from the Lipedema community through our idea database, and the samples and data emerging from the Biobank.
Each project follows a structure of clear milestones and regular reviews. Findings will be shared through peer-reviewed publication and on our website.
For more information about the Lipedema Foundation's research programs, or to inquire about research collaboration, visit lipedema.org/lf-initiated-research or contact awards@lipedema.org.
Our first two initiatives
We have launched two projects, each targeting a foundational gap in Lipedema science.
Expanding the Lipedema Biobank
Research into Lipedema has long been limited by the lack of well-annotated biological samples available to scientists. The LF Biobank is changing that by collecting blood, urine, and tissue samples from people with Lipedema and healthy controls, paired with detailed clinical data. In 2026, we are focused on significant enrollment growth and building the systems to scale reliably for the future.Proteomics: A New Window into Lipedema Biology
We are conducting the most comprehensive analysis of the Lipedema plasma proteome ever undertaken. Using the SomaScan platform which is capable of simultaneously measuring more than 10,000 proteins, we are building the first meaningful baseline of protein expression in Lipedema patients. Measuring protein expression on plasma from hundreds of participants with Lipedema could open new directions for diagnostics and treatment.