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!

Lipedema research is still in its infancy. While we do not yet have definitive answers to many questions, a handful of studies published in 2023 provide promising beginnings for future investigation. The studies featured here highlight the steady advancement of a nascent field. The past twelve months saw the publication of 100 papers on Lipedema, with close to 50 primary data papers, and some significant reports funded by the Lipedema Foundation (LF). It is our hope that this forward momentum will serve to inspire our community and ignite new research questions in 2024 and beyond.

The Lipedema Foundation (LF) has taken a big step toward solving a problem at the heart of patients’ struggles: a lack of scientific understanding of Lipedema as a distinct disease. The key place where scientific understanding begins is in research laboratories, which need access to a reliable source of biosamples (also called biological samples) for study. But biosamples have been insufficient for the field of Lipedema research—until now.

In the summer of 2023, LF formed a partnership with Vanderbilt University Medical Center (VUMC) and awarded it a $709,500 grant to help establish the first-ever Lipedema biorepository, or “library” of biosamples. This is a collaborative grant, awarded to investigators in the SALT (Sodium Adipose & Lymphatics Translational) Imaging Lab in the Department of Radiology and the Vascular Medicine Section in the Division of Cardiovascular Medicine. This biorepository will dramatically expand research capabilities.

The “invisible” symptoms of Lipedema pose challenges to research and treatment. Patients experience a variety of symptoms that are not easily measured clinically, such as pain, fatigue, and muscle pain. The inability to capture these experienced symptoms precisely and consistently can make it difficult for researchers and clinicians to track and gather data, which can contribute to the challenge of both understanding and diagnosing the disease, and comparing data across studies.

One tool that can be used to better catalog and understand Lipedema symptoms is Patient Reported Outcome Measures (PROMs). PROMs are a type of survey that collects independent patient reports on health, symptoms, quality of life, or other status related to a condition or treatment.

Despite estimates that Lipedema may affect approximately 1 in 10 adult women [1,2,3], Lipedema is understudied, and its root causes remain unknown. Several lines of evidence, however, suggest that sex hormones may help trigger the condition and influence its progression. For example, Lipedema primarily occurs in women, and many women report that their symptoms began during a period of hormonal changes, such as puberty or pregnancy [4,5,6,7,8,9,10,11,12],  Studying these links between sex hormones and Lipedema offers an exciting opportunity to deepen our understanding of the disease in ways that could facilitate diagnosis, help us characterize exactly how Lipedema affects adipose (fat) tissue, and ultimately design better treatments.