Collaborating for Progress: Shaping the Future of Research

Last November, the Lipedema Foundation held its biennial Scientific Retreat in Herndon, Virginia—a unique event that brought together LF-funded researchers, clinicians, patient advocates, and invited guests. With 80 attendees representing 13 countries, the retreat marked our largest and most globally-represented gathering to date. Awardees presented unpublished findings and exchanged ideas across disciplines, all with the shared goal of deepening our understanding of Lipedema biology.

Presenting unpublished data can speed up discovery and collaboration - but doing so is very sensitive, since science is competitive. To promote open sharing and candor, LF’s retreats are small by design, and details of discussions are private to those in attendance. However, we are excited to share a few high level takeaways from this event, which highlighted discoveries in Lipedema-related biology, innovative methodologies, and emerging insights into potential mechanisms underlying the disease.

The Lipedema Foundation Scientific Retreat brought 80+ attendees from 13 countries together in Herndon, Virginia to push the boundaries of what’s possible in Lipedema research.

Scientific Presentations: Groundbreaking Research, Shared Early

The research retreat delivered a powerful convergence of science, technology, and patient-centered innovation—pushing the boundaries of what’s possible in Lipedema research. Featuring new findings from LF-funded research, including unpublished and confidential data, compelling presentations previewed the data that we anticipate will shape the field in the coming years.

Presentations spanned a rich spectrum of topics, from clinical investigations and cutting-edge imaging technology to emerging insights in adipose biology, inflammation, and progenitor cells. Researchers explored the genetic and molecular signatures that may define Lipedema, shared new tools for single-cell analysis, and showcased novel models and therapeutic approaches aimed at reshaping the future of care.

Explore Recent Projects to dive deeper into LF-funded research.

While much of the research presented at the Retreat is still new and unpublished, some has already been released by the researchers. You can find those papers here:

  • Adipose tissue biology and effect of weight loss in women with lipedema. Cifarelli, et al. [1]

  • Comparison of fluid and body composition measures in women with lipoedema, lymphoedema, and control participants. Stellmaker, et al. [2]

  • Non-obese lipedema patients show a distinctly altered quantitative sensory testing profile with high diagnostic potential. Dinnendahl, et al. [3]

  • A Divergent Platelet Transcriptome in Patients with Lipedema and Lymphedema. Scalise, et al. [4]

  • Venous thromboembolic outcomes in patients with lymphedema and lipedema: An analysis from the National Inpatient Sample. Khalid, et al. [5]

More research will be published in the months and years to come as LF-funded projects complete and their authors submit results to peer-reviewed science journals.

In addition to LF awardees, the Retreat also featured four keynote presentations designed to provoke novel ideas from outside the field: 

  • Dr. Mariana Castells of Brigham and Women's Hospital and Harvard Medical School presented the topic: Mast Cells: Is there a Role in Lipedema? A leading authority on mast cell disorders, Dr. Castells emphasized the biological complexity and clinical implications of mast cell activation syndrome (MCAS), which resonated with both researchers and patient advocates alike. 

  • Richard Novak of Unravel Biosciences, in his presentation Patients First: Transforming Drug Development through Rapid Clinical Discovery and Validation, highlighted that patients – not diagnoses – respond to treatments, and the importance of building effective drugs through a patient-centric ecosystem.

  • Matthew Scholz of Oisin Biotechnologies, in his talk on Selective Ablation of Adipocytes via a Transcriptionally Controlled Suicide Gene, considered the possibilities for developing a transcriptionally-targeted fat killing therapy that could potentially be used to target Lipedema in adipose tissue.

  • S. Chakra Chennubhotla of PredxBio, Inc. presented the topic Exploring the Potential of Spatial Biology for Lipedema, discussed the power of spatial omics technologies to reveal emergent and/or previously known pathological processes of Lipedema by harnessing new technologies.

As the sessions unfolded, a clear theme emerged: meaningful progress will come from bold collaboration across disciplines, fueled by curiosity, compassion, and innovation. Together, these insights opened new frontiers and sparked vital questions that will shape the next chapter of Lipedema discovery.

Patient Perspectives: From Research to Advocacy

A highlight of the retreat continues to be presentations dedicated to articulating the lived experience of patients.

Polly Armour and Sharie Fetzer share personal perspectives in the Living with Lipedema roundtable discussion.

The roundtable Living with Lipedema introduced Polly Armour and Sharie Fetzer, who generously shared their personal journeys, offering context on the impact of the scientific work underway on the patients whose medical care hinges on progress in this field. Polly, the Research Coordinator for Fat Disorders Resource Society, spoke to the importance of informed care and the continuing challenges patients face when seeking diagnosis and support. Sharie Fetzer, the Chair of Lipoedema UK, reflected on the patient voice as a catalyst for international research collaboration and the value of long-term advocacy.

In her talk The Impact of Research on My Lipedema Journey, patient advocate Hiba Hamati underscored the transformative role of scientific discovery in restoring hope, and shared her appreciation of the direct impact researchers in the audience have made on her own journey.

Advocacy consultant Sarah Bramblette shared personal experiences in Living with Lipedema: Adversity to Advocate, emphasizing the need for systemic change and broader awareness in healthcare. She explained how these experiences have driven her to champion large-scale advocacy efforts for people living with chronic illness.

Sarah Bramblette shares how her Lipedema journey progressed from adversity to advocacy.

Hiba Hamati addresses the researchers whose work directly resulted in a proper diagnosis after decades of misdiagnosis.

Patient stories inspire our mission and drive our commitment to define, diagnose, and develop treatments for Lipedema, and they serve as a powerful reminder of why this research matters.

The Scientific Retreat continues to serve as a touchstone for our mission to support rigorous, biology-focused research. As a funder, we remain committed to advancing a scientific understanding that can ultimately enable better diagnostics, new treatment options, and improved quality of life for those affected.

Visit 2025 Request for Proposals to learn more about current funding opportunities available.

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

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.

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.