National Congress on Lipedema

In 2022, the AMLF organized the first national conference dedicated to lipedema. In 2027, France Lipœdème and the AMLF joined forces to take things a step further, hosting a conference that was both medical-scientific and patient-centered at the Cité des Sciences. It stems from a simple observation: the number of patients is increasing and clinical practice is expanding, but the scientific understanding of this condition remains fragmented.

Lipedema is a chronic disorder of the subcutaneous adipose tissue. It affects almost exclusively women. It is characterized by bilateral, symmetrical fat accumulation, primarily in the lower limbs and sometimes in the arms, while the hands and feet are spared. This accumulation is accompanied by pain, tenderness to the touch, and a tendency to bruise. The condition most often appears or worsens during major hormonal changes (puberty, pregnancy, menopause), and this adipose tissue is resistant to dieting and physical activity.

The WHO has included it in the ICD-11 (code EF02.2), but it remains underdiagnosed. It is often confused with obesity or lymphedema, and estimates of its prevalence vary widely from one study to another. To date, there are no validated biomarkers, no consensus imaging criteria, and no standard treatment.

The mechanisms involved remain poorly understood. Several possibilities are being investigated: a genetic predisposition, suggested by the frequency of familial forms; hormonal regulation, particularly by estrogens; adipocyte hypertrophy with low-grade inflammation; abnormalities in microcirculation and the lymphatic system; and remodeling of the extracellular matrix.

The conference brings together specialists in genetics, adipose tissue biology, vascular and lymphatic biology, as well as clinicians. It will also feature patient-centered hands-on workshops, organized in collaboration with the AMLF, where patients and practitioners who treat lipedema will present together.

It has three objectives:

• take stock of the current state of knowledge;
• compare basic and clinical approaches;
• identify priorities for research, diagnosis, and care.