LF-Initiated Research
Advancing Lipedema Science from Within
The Lipedema Foundation is the world's largest funder of projects to elucidate biological mechanisms, to define disease presentation and to understand progression of 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 other aspects of Lipedema physiology. However, there remains much to be done, and new opportunities for research continue to emerge. To accelerate progress and complement external research, we are launching our own internally led research projects to support our mission to define, diagnose, and develop treatments for Lipedema.
Why LF Leads Its Own Research
We are launching LF-initiated and managed projects primarily to complement and support the ongoing efforts of Lipedema researchers. Through collaboration with academic investigators, LF focuses on projects that require centralized coordination, shared infrastructure, or scale beyond the scope of individual laboratories. Data collected through these efforts are widely shared – supporting the labs that donated samples and furthering our understanding of Lipedema. LF-initiated projects are designed to enable, and not replace, investigator-initiated research by generating shared resources, foundational datasets, and high-risk pilot data that are difficult to produce within traditional academic funding structures.
Our Approach
Our internal research program is a dynamic collaboration, leveraging the expertise of dedicated Lipedema Foundation staff alongside specialized external contractors and partners. Our Scientific Advisory Committee reviews our research questions and proposed directions, offering essential feedback and recommendations regarding projects that the Foundation is best equipped to manage and execute. This structure allows us to contribute distinct strengths that complement traditional academic research pursuits.
LF employs a multifaceted and rigorous approach to selection and prioritization of research projects. This process ensures that projects are strategically aligned with the Foundation's goals and address the most critical needs of the Lipedema community. Our selection process is driven by several factors:
Strategic Directives
We select internal projects to fill identified knowledge gaps or explore strategic areas that the Foundation deems essential for advancing the field. As part of the review, the Foundation considers its currently funded external research projects to avoid any duplication in investment.
Literature and Innovation Review
We constantly review published literature to pinpoint new directions, existing gaps, and immediate opportunities. We also draw inspiration from the latest innovative research methods in other fields to assess their potential application in Lipedema research.
Community Input
We regularly review submissions to our idea database, incorporating directions and research gaps identified by members of the community.
Biobank-Driven Research
As we develop our Biobank, we actively seek ways to utilize its samples in research projects.
How we elevate and share progress
Projects follow a structure of clear milestones and accountability. Regular reviews will assess the progress of each initiative, allowing us to refine our approaches and direction based on the latest evidence.
We are committed to sharing our findings with the research community through peer-reviewed publications or on our website, regardless of the outcomes.
Current Research Initiatives
Expanding the Biobank
The Lipedema Biobank was established to bridge a significant gap in research: the lack of readily available, well-annotated samples from individuals with Lipedema. The 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.
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Biobank sample collection is conducted through event-based recruitment (e.g. conferences) and in collaboration with clinical partnerships.
Prior to collection events LF sends out calls for volunteers and/or participants to sign through our newsletter and social media network. We collect biological samples and data from unaffected people (controls) and people with Lipedema.
Detailed phenotypic and participant data is collected using our Common Case Report Form (CCRF), alongside samples gathered through standardized collection and processing protocols.
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The biobank expansion in 2026 will prioritize both quantitative and operational goals. Key quantitative targets include enrolling over 100 new participants and increasing our collection of blood and adipose tissue samples. Beyond meeting these targets, we are focused on understanding how to reliably and efficiently scale the biobank for future growth.
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This project expands the availability of research-ready samples and creates a sustainable resource that other research studies can use to investigate the pathophysiology of Lipedema. Researchers can learn more here. We will also have participant clinical and demographic data collected through the LF developed CCRF.
SomaScan for Proteomics
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 reveals valuable insights into disease states. To investigate this in Lipedema, we are studying the protein content in plasma of Lipedema patients using samples collected as part of the LF BioBank as well as that of several collaborating laboratories. Plasma proteomics can reveal important underlying biology from any part of the body, because proteins from every tissue end up in circulation. By understanding the changes in protein expression in Lipedema patients, we aim to fill critical gaps in our understanding of the disease and further advance diagnostics and treatment.
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Samples from the Lipedema Foundation Biobank, along with samples from collaborating laboratories, will be analyzed.
Data will be generated by SomaLogic using their SomaScan approach, a high-throughput, aptamer-based proteomics platform capable of simultaneously surveying over 10,000 proteins.
After validation of the discovery data, exploratory bioinformatics analyses will be carried out on the generated data to pinpoint potential biomarkers and genes linked to Lipedema.
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Plasma proteomics only exists for a small number of Lipedema samples - this experiment will set the baseline. Any differences between controls and Lipedema cases will be a significant success.
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This project represents the most ambitious and comprehensive analysis of the Lipedema plasma proteome conducted to date. By including a significantly larger sample size and broader target coverage than previous studies, the research will yield essential outcomes that will serve as the foundation for future experiments.
The resulting plasma proteomic scan, coupled with its associated metadata, will be a valuable infrastructural contribution to the field. These insights will empower researchers to formulate more precise and impactful research questions.