The Lipedema World Alliance is an international not-for-profit association. It brings physicians, researchers and patient organisations together so that lipedema is better understood and cared for worldwide.
We create a place where healthcare professionals, researchers and patient associations from many countries explore the open questions of lipedema together, and we promote the scientific dialogue that improves understanding and care for people living with it.
Lipedema was ignored and neglected for a long time. Much of the recent interest and research was driven by patients searching for answers. The alliance exists so that research moves forward together.
Working together we can make a change
A future in which the causes of lipedema and the best ways to manage it are well understood. We believe that patient advocates and professionals will get there by working together.
Our goals fall into two groups. Both serve one aim: better understanding, diagnosis and care of lipedema.
Beyond research, the alliance works with the wider public and with health institutions.
The alliance works towards internationally recognised diagnostic criteria and supports new diagnostic and therapeutic approaches. A first result is the Delphi consensus.
Read about the consensusHigh-quality research needs clinicians and scientists from different disciplines working together.
Our history
Four years from registration to the third world congress.
22 July 2022
Healthcare professionals, researchers and representatives of patient associations from several countries founded the alliance. It was registered in Rome as an international not-for-profit association under Italian law.
5 to 7 October 2023
More than 500 participants from over 35 countries met at the Kongresshotel Potsdam. On 7 October the Delphi statements on the definition and management of lipedema were discussed and voted on site.
5 to 8 November 2025
More than 870 participants from 40 countries and over 250 scientific contributions at the Fiera di Roma. On 7 November the first in-person General Assembly appointed the new board.
January 2026
The position paper from Potsdam appeared in Nature Communications: 59 of 62 statements reached consensus among experts from 19 countries. In the same month PD Dr. Mojtaba Ghods was announced as President of the alliance for three years.
28 to 31 October 2026
An international lymphoedema and lipedema congress held in collaboration with the Lipedema World Alliance and the International Lipedema Association.
11 to 14 November 2027
The first world congress outside Europe, at the Crown Conference Centre and together with the Lipoedema Australia Conference VII.
An association under Italian law with members in three groups, a Members' Assembly and an elected board.
The sovereign body. Members vote on the statute, approve the accounts once a year and elect the board.
Elected for three years. At least one member from each group, no group above half of the seats. The board appoints the President, Vice President and Secretary.
The current boardPhysicians, researchers and patient advocates lead the alliance together. Dr. Sandro Michelini is Honorary President.
Physicians, researchers, therapists and patient organisations are welcome. Together we can move lipedema care forward.
