Lipedema Foundation Biobank
The Lipedema Foundation Biobank is a new initiative created to support research into the causes, diagnosis, and treatment of Lipedema. By collecting and securely storing biospecimens and health information from individuals with Lipedema and related conditions, the Biobank will become a resource for scientists working to better understand this complex disease.
We are just at the beginning of this effort — the launch of the Biobank marks an exciting new chapter in our work to enable high-quality, high-impact research.
WHY A BIOBANK?
Lipedema is a poorly understood condition, and researchers have long faced challenges accessing well-annotated samples from individuals with Lipedema. The Biobank is designed to address that gap by providing approved researchers with de-identified biological samples—such as blood, urine, adipose, and other tissue types—alongside relevant clinical and lifestyle information.
Over time, this resource can support a wide range of studies, including investigations into the biology of Lipedema, the potential development of diagnostic tools, biomarkers, and the search for new treatments.
WHERE WE ARE NOW
We officially launched the Lipedema Foundation Biobank with a collection at the 2025 Fat Disorders Resource Society (FDRS) conference. At this event, we collected blood and urine samples and data from 74 participants—a foundational step toward building a larger, more comprehensive resource.
As the Biobank continues to grow, we are working with Lipedema clinical collaborators and surgeons to support the collection of additional biospecimens, including blood, urine, saliva, adipose, lipoaspirate, and other tissue types, as part of routine care or research activities. In parallel, we are exploring additional research collection opportunities, including participation in scientific meetings such as the upcoming Boston Lymphatics Symposium and consideration of other targeted research events. We are focused on expanding access thoughtfully, with the goal of making participation more accessible for individuals and families affected by Lipedema.
This is just the beginning, and we remain committed to building the Biobank with care, transparency, and scientific rigor.
If you’d like to stay updated as we grow:
Biobank Updates
As this effort takes shape, we’ll use our blog to share regular updates about new participation opportunities, research partnerships, and what we’re learning along the way.
Latest Biobank Updates
Live Research at FDRS 2025: A Milestone for the LF Lipedema Biobank
Our first-ever sample collection event brought together 74 participants and marked the launch of the Biobank. Read more on the blog here.LF Biobank Expands through Clinical Collaboration
With our first two clinical collaborations now live, the LF Biobank enters its next phase of growth. Read more on the blog here.
RECRUITING NOW: Live Research at Boston Lymphatics Symposium
Our next Biobank Event is on February 20 in Boston, MA. Learn more and sign up to participate here.
Stay tuned for additional opportunities to participate!
Special Note: Families with Lipedema
If you have a family with two or more members diagnosed with Lipedema and are interested in future research opportunities, we’d love to hear from you. Please fill out this form to tell us more.
If you are a clinician or surgeon interested in supporting this effort by collecting samples as part of your practice or research, we would like to explore opportunities for collaboration. Please contact us at biobank@lipedema.org to learn more about how to get involved.