Rome 2025: what the second Lipedema World Congress showed

This article summarises the official report on the second Lipedema World Congress, written by Sandro Michelini and dated 28 November 2025 [1]. Findings from talks are given as presented at the congress. They are not established facts and not treatment recommendations.

When and where did the congress take place?

The congress ran from 5 to 8 November 2025 at Fiera di Roma, Pavilion 10, under the auspices of the Lipedema World Alliance [1, 2]. The congress presidents were Karen L. Herbst, Sandro Michelini and Mojtaba Ghods [2].

How large was the congress?

According to the report, the organising secretariat GC Congressi managed over 870 participants from 40 countries [1]. Alongside the plenary sessions there were seven oral presentation sessions, two poster sessions with discussion, four workshops and a lunch session, with over 250 original scientific contributions in total [1]. The website of the next congress gives a higher attendance figure for Rome, more than 900 attendees from 48 countries [3]. This article uses the numbers of the report.

What happened before the main programme?

The congress opened on 5 November with a pre-congress session on surgery. Over 250 people attended. Several experts, among them Mojtaba Ghods, Thomas Wright and Ramin Shayan, gave presentations and then answered questions on surgical indications in a round table [1].

In the afternoon, patient associations met with healthcare professionals. The report states that the disease “is still not covered (apart from rare exceptions such as Germany) by the public and private healthcare systems of almost all countries” [1].

Which topics did the congress cover?

The scientific programme ran from 6 to 8 November and covered the basic science, diagnosis and treatment of lipedema [1].

Genetics and the origins of lipedema

The report describes heredity as one of the few points shared by the scientific community. The LWA Delphi consensus is more cautious and states that lipedema “is hereditary in some cases” [1, 4]. Speakers presented work on how lipedema fat cells develop, on activated mast cells, and on a micro-RNA from affected tissue that, according to the report, could become a first biological marker. The report also notes that the disease is, to date, diagnosed only clinically [1].

Diagnosis and imaging

Several groups reported their experience with laser Doppler measurement of the microcirculation, bioimpedance analysis, three-dimensional ultrasound, lymphoscintigraphy, lymphatic MRI and indocyanine green lymphofluoroscopy [1]. Ramin Shayan presented findings on a possible role of the lymphatic system, which the report says led to a heated discussion [1].

Surgery

Mojtaba Ghods presented the surgical approach of the Potsdam school, in which the technique is chosen according to the condition of the tissue, the areas affected and the volume to be removed [1]. Paula Frederichi said that a conservative option should always be explored with the patient first. According to the report, the discussion that followed highlighted that lymphatic diversion or reconstructive surgery is not advisable in lipedema, because of the risk of secondary lymphedema [1]. Manuel Cornely noted that lipedema surgery has been recognised by the German national health system since July 2025 [1].

GLP-1 medicines

The use of GLP-1 receptor agonists was discussed in a lecture and a round table moderated by Thomas Wright. The report summarises the outcome as follows: “GLP1 agonists can be used in patients with lipedema, but the following aspects still need to be better defined: individual dosage of the single molecules and its dynamic changes over time, duration of treatment, indications in case of side effects, and cost (currently still fully borne by the patient).” [1]

For context, the LWA Delphi consensus states: “Currently, there is no evidence for the effectiveness of any pharmacological interventions in treating lipedema” [4]. Anyone considering such a medicine should talk to a specialist.

Guidelines and the LWA consensus

Philipp Kruppa presented the LWA Delphi consensus, then in publication. Gabriele Faerber presented the German guideline of 2024, and Karen L. Herbst discussed points of the US standard of care. According to the report, a comparison showed that the official documents “fortunately converge on many points” [1]. Our article on the LWA Delphi consensus explains the result.

Exercise, nutrition and pain

Sessions on physical therapy and exercise covered compression bandaging, garments and pain, and the right intensity of physical activity, described in one lecture as “medium-low intensity and not high” [1]. The nutrition session covered low-carbohydrate, anti-inflammatory and ketogenic diets [1]. A session on pain asked, among other things, whether lipedema pain is neuropathic, and looked at how pain relates to BMI and clinical stage, which the report describes as “not decisive” [1].

Comorbidities

Speakers reported on joint hypermobility, thyroid disorders, intestinal barrier function and metabolic factors in people with lipedema [1]. The Delphi consensus treats some of these links with caution, for example stating that lipedema “might be associated with connective tissue disorders, such as hypermobility spectrum disorders” [4].

Research priorities raised by patient associations

The final panel, moderated by Jonathan Kartt, brought together researchers and representatives of patient associations from the UK and the US. Research areas named included genetics, clinical trials of possible new drugs, and conservative and surgical therapies [1].

What did the first LWA General Assembly decide?

The first in-person General Assembly of the LWA met on 7 November 2025 [1, 2]. According to the report, it recalled the milestones of the association, discussed possible venues and dates for the next biennial congresses, and officially appointed the members of the new board proposed by the outgoing board [1]. The LWA board page now lists Mojtaba Ghods as president and Sandro Michelini as honorary president [5].

Where will the next congress take place?

The report closed with “See you in two years, probably in Virginia (USA)” [1]. Since then, Lipedema World Congress III has been announced for 11 to 14 November 2027 in Melbourne, at the Crown Conference Centre, together with the Lipoedema Australia Conference VII. It will be the first Lipedema World Congress held outside Europe [3]. Details are on our congress page.

This article was prepared for the LWA website relaunch and is awaiting medical review by the LWA board.