For Researchers
Lipedema research is challenged by a lack of diagnostic tools and limited disease biology. The Lipedema Foundation is working to build the research community and provide grants to address the basic biology, genetics and epidemiology of Lipedema. The Foundation's Research Program is focused on building the research field needed to define, diagnose, and develop treatments for Lipedema. You can search for published research papers in the Legato Lipedema Library.
Lipedema Research Challenges
Absence of diagnostic tools
Diagnosis of Lipedema involves a clinical assessment and discussion of the individual’s medical history, a process that is difficult to scale within the current healthcare system. The absence of diagnostic tools to streamline or confirm a clinical diagnosis is a key unmet need, which if addressed by research, has the potential to dramatically change the trajectory of the disease. More on diagnosis.
Limited disease biology
Little is known about how and why Lipedema develops in a patient.
Although the disease is reported to occur during puberty and other periods of hormonal changes, why this happens is not understood
The painful fat and swelling in some patients can be so debilitating that their mobility is impaired; yet what drives these symptoms is unknown
Psychosocial issues are also prevalent in women with Lipedema, contributing to health burden and complexity of disease management
Many patients develop the disease alongside obesity; however, diet, exercise, and weight loss surgery have limited effect on Lipedema fat
Although the lack of disease biology is staggering, research efforts can leverage the desire of patients to participate in studies to improve their and the entire field’s understanding of Lipedema. The convergence of multiple scientific topics around Lipedema indicates that addressing these gaps in research will also improve the understanding of hormone, pain and edema, mental health, and metabolic biology.
Building the lipedema research network
Established in 2015, LF has committed over $11 million research dollars towards defining, diagnosing and developing treatments for Lipedema. Our research program currently supports basic, diagnostic, genetic, and clinical researchers. More on our grantees.
Our 2021 funding cycle has recently launched 16 new projects aimed at defining the Lipedema research space.
Attendees of the 2016 Lipedema Scientific Retreat
First row, left to right, Ad Hendrickx (Nij Smellinghe Hospital), Harry Voesten (Nij Smellinghe Hospital), LaTese Briggs (Milken Institute), Felicitie Daftuar (Lipedema Foundation), Karen Herbst (University of Arizona), Natasha Harvey (University of South Australia), and Walter Cromer (Texas A&M Health Science Center).
Second row, Rachelle Crescenzi (Vanderbilt University), Eva Sevick-Muraca (University of Texas Health Science Center, Houston), Carol Haft (NIDDK), Eser Tolunay (NHLBI), Melissa Stevens (Milken Institute), Hamish Scott (University of South Australia), Echoe Bouta (Massachusetts General Hospital), Amira Klip (The Hospital for Sick Children), Carrie Shawber (Columbia University), Kristiana Gordon (St. George’s, University of London), Bruce Bunnell (Tulane University), and Kathy Russell (Consultant).
Last row, Sara Al-Ghadban (University of Arizona), Neil Piller (Flinders Medical Centre), Yann Klimentidis (University of Arizona), Erik Lontok (Milken Institute), Tim Padera (Massachusetts General Hospital), Jens Titze (Vanderbilt University), Peter Wang (Washington University), Joseph Rutkowski (Texas A&M College of Medicine), Glen Brice (St. George’s, University of London), Pia Ostergaard (St. George’s, University of London), Melody Swartz (University of Chicago), Annalisa Zecchin (KU Leuven), and Maura Donlan (Milken Institute).
Attendees not pictured, Tobias Bertsch (Foeldi Clinic), Deborah Clegg (Cedars-Sinai Diabetes and Obesity Research Institute), Danielle Wildstein (Lipedema Foundation), and Philipp Scherer (The University of Texas Southwestern Medical Center).