The Lipedema Foundation is the world's largest funder of projects to uncover biological mechanisms, disease presentation and progression for Lipedema. Since inception, the Foundation has made significant investments into research being performed in labs across the globe. Areas of study include adipose biology, vascular involvement, the role of the lymphatic system, mechanisms of pain, the relationship with the immune system and a host of other aspects of Lipedema. However, there remains much to be done, and new avenues for research continue to emerge.
Today, we announce the next chapter: the Foundation is initiating and managing 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. Part of the mission of the Foundation is to create, expand, and support the research community. We do this through our retreat to bring the research community together, funding grants to support individuals working on important aspects of Lipedema physiology and now we are using internal resources to create foundational structures and data to enhance the field.
High-risk, high-reward science
Some of the most important 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. Multi-site collaboration and pooled resources strengthen these efforts. The Foundation is well positioned to convene partners and support this 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, often in collaboration with external investigators and clinical partners, on a timeline that academic structures rarely allow.Building shared resources
Internally led projects are designed to generate tools, datasets, and standards that others can use. These resources are developed with and for the broader research community, with input and contributions from collaborating labs. 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 the Foudation’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 LF 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 LF Biobank
The LF Biobank was established to bridge a significant gap in research: the lack of readily available, well-annotated samples from individuals with Lipedema. The LF Biobank addresses this challenge by supplying authorized researchers with de-identified biological samples, including blood, urine, adipose, and other tissue types, along with corresponding clinical and lifestyle data.Proteomics: A New Window into Lipedema Biology
We are working to build a comprehensive understanding of the Lipedema proteome – the full complement of proteins expressed in cells, tissues, or whole organisms. Because proteins are the functional molecules that carry out cellular processes, changes in their structure or expression reveal valuable insights into disease states. To investigate this in Lipedema, we are studying the protein content in plasma of individuals with Lipedema using samples collected as part of the LF BioBank as well as samples from several collaborating laboratories. Plasma proteomics can reveal important underlying biology from any part of the body, because proteins from every tissue can end up in circulation. By understanding the changes in protein expression in individuals with Lipedema, we aim to fill critical gaps in our understanding of the disease and generate further annotated biospecimens, standardized protocols, plasma proteomic datasets, candidate biomarkers, publicly shared summaries, or peer-reviewed publications.
Get involved
Could your clinic be our next LF Biobank site?
Help us move research forward. If your practice regularly sees, diagnoses, and cares for people with Lipedema, your site can contribute to the LF Biobank. Saliva, blood, and clinical data are immensely valuable; sites doing surgical procedures can contribute lipoaspirate and biopsies. Collection integrates flexibly with your routine practice, is well supported by our team, and runs under our IRB-approved protocol. To learn more about being a participating site, contact biobank@lipedema.org.
Are you a researcher interested in samples for your next study?
Researchers can visit lipedema.org/sample-resources to view Lipedema sample availability in the LF and other biobanks. To request access to samples, please reach out to biobank@lipedema.org.