Live Research at FDRS 2025: A Milestone for the LF Lipedema Biobank

Three biobank samples from Live Research with the Lipedema Foundation

Three biobank samples from Live Research

We’re proud to share a major milestone for the Lipedema Foundation: the official launch of the LF Lipedema Biobank at this year’s Fat Disorders Resource Society (FDRS) Conference. As part of the conference, we hosted a Live Research event that brought together researchers, clinicians, and individuals living with Lipedema to support research in real time.

Over the course of the event, we collected biological samples from 74 participants—marking the very first contributions to the biobank. These samples, along with accompanying clinical data, will serve as an invaluable resource for future studies focused on understanding the potential causes, progression, and treatments for Lipedema.

Case of biobank samples from Live Research with the Lipedema Foundation

Case of biobank samples from Live Research

Biobanks are tools that help scientists draw correlations between health data and biological samples. 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. Since no animal model systems are available for Lipedema, a biobank of human samples is particularly important.

Launching a biobank is a complex process, and we’re grateful to the many individuals who made this possible. From the participants who generously donated their time and biosamples, to the clinicians and volunteers who ensured a smooth and respectful experience for everyone involved—this event was the result of true collaboration.

The LF Lipedema Biobank is designed to support long-term, high-impact research. This will include projects that will be led by members of the Lipedema Foundation’s science team - what we are currently calling “Foundation-initiated research” - as well as ones that will be conducted by scientists based at academic institutions. We will launch the first Foundation-initiated research projects with LF Biobank samples in the next few months. Likely early projects include plasma proteomics and immune profiling.

Also in the coming months, other scientists will be able to start applying for access to biobank samples and data. If their projects are approved for access, we will then begin preparing and distributing samples to support their work to deepen the scientific understanding of Lipedema. This is just the beginning of what we hope will become a robust, well-annotated resource that accelerates progress across the field.

The FDRS event is a fantastic beginning, but we’re really just getting started. Some of the research projects that we envision will require many more participants than we recruited in this first event. Some will need specific categories of participants (e.g., members of families with multiple diagnosed individuals), and many will require more “control” participants (i.e., those not affected by Lipedema). Still other studies will require additional sample types that are not yet in the Biobank, like fat biopsies, lipoaspirate, and even saliva or stool. 

So while we’ve got a lot of work ahead of us to empower the scientific community to make blockbuster discoveries, we’re off to a great start.

As we continue to build out the Biobank, we’ll be sharing regular updates. From scientific highlights to behind-the-scenes looks at the biobanking process, we’re committed to keeping the Lipedema community informed and engaged.

Thank you to everyone who helped make this launch a success—we’re looking forward to what comes next.

The LF team ready for the first biobank participant, who will give samples and data, at Live Research

The LF team ready for our first biobank participant!

Understanding Pain in Lipedema: An Interview with Pain Researchers

In 2022, Lipedema Foundation sponsored research by Prof. Dr. Tim Hucho and Rebecca Dinnendahl, PhDc in Germany. The goal of this recently published research study was to make such reports of pain in part objectifiable by measuring the sensitivity to a variety of stimuli such as warmth, cold, touch, painful heat, painful cold, pressure pain, and vibration. Their findings suggest a heightened sensitivity to pressure pain, a reduction in sensitivity to vibration, and a completely normal response for all other tested sensations.

The Lipedema Foundation had the pleasure of interviewing Dr. Tim Hucho, the Principal Investigator, and neuroscientist Rebecca Dinnendahl, first author on the publication and lead scientist of the study, to discuss what pain is and why this research matters for individuals with Lipedema, clinicians, and the research community.  Read more to hear their perspective on pain in general, on the research outcomes, their thoughts on working with the Lipedema population, and future implications for enhancing the early diagnosis of Lipedema – specifically an explanation of the potential of using sensory testing as an accessible diagnostic tool going forward. 

Understanding Pelvic Health: Interview with Pelvic Floor Therapists

In this insightful interview, pelvic health experts Tiffany Baker, PhD(eligible), PT, DPT, CFMT, C.Ac., CPT (NASM-PES), and Kelly Schroeder, PT, DPT, CLT, MBA, discuss the intricacies of the pelvic floor, the importance of pelvic health for women, particularly those with Lipedema, and what to expect from pelvic floor therapy. Their combined expertise offers valuable information for anyone seeking to understand and improve their pelvic health. 

Empowerment For Your Lipedema Journey: 5 Reasons to Attend FDRS 2024 This Spring

We are excited to share that the Fat Disorders Resource Society (FDRS), a volunteer patient-led organization, is hosting its annual conference (FDRS 2024 Annual Conference) in St. Louis on April 19-21. The Lipedema Foundation will be attending the event, which gathers patients, clinicians, therapists, and researchers for education, networking, and listening.  There are many wonderful aspects of FDRS, and LF has compiled 5 compelling ones we hope will encourage you to attend in 2024!