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.

At the Lipedema Foundation, we believe that understanding the lived experiences of women with Lipedema is critical to advancing care and support. That’s why we’re excited to highlight the work of Johanna Falck, a nurse, midwife, and PhD at Jönköping University in Sweden, whose groundbreaking study sheds light on an often-overlooked dimension of this condition: sexual health and intimate relationships.

In her recently published paper, Experiences of Sexual Health and Intimate Relationships in Women With Lipedema: A Qualitative Study (Journal of Advanced Nursing, 2025) Falck and co-authors explores how women with Lipedema navigate complex emotional landscapes marked by body shame, stigma, and silence. Through in-depth interviews with women living with Lipedema, her study offers powerful insights into how the condition impacts not only physical comfort and mobility, but also identity, partnership, and the ability to connect emotionally and physically.

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 Awardees presented unpublished findings and exchanged ideas across disciplines, all with the shared goal of deepening our understanding of Lipedema biology.

Presenting unpublished data can speed up discovery and collaboration - but doing so is very sensitive, since science is competitive.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.

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.

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.