About us

Welcome to Lipedema World Alliance, a non-profit organization founded in 2022 by a board composed of dedicated healthcare professionals, researchers, and passionate representatives from patient associations across various countries.

Led by President Dr. Sandro Michelini and Vice President Dr. Karen Herbst, the board proudly includes representation from patient associations, including LIO Lipedema Italia, Lipoedema UK, and andLINFA.


Lipedema World Alliance


LWA is dedicated to fostering a collaborative environment wherein healthcare professionals, researchers, and patient associations from diverse nations unite to explore the myriad unanswered questions surrounding lipedema. Our mission is to cultivate scientific dialogue with the aim of enhancing comprehension and care for people living with lipedema.


Lipedema has long been a Cinderella disease, ignored and neglected. Recent interest and research have often been driven by patients’ desperation and passion to find answers. Our shared goal is to propel further research into lipedema, and we’re resolute in pursuing this endeavor collectively.


What We Will Achieve Together


LWA envisions a future where the intricacies of lipedema’s pathology and optimal management strategies are comprehensively understood. We believe fervently that the most effective means of attaining this understanding lies in fostering a spirit of collaboration, uniting patient advocates and professionals. This collaborative approach serves to:

  • Cultivate open dialogues among patients, clinicians, and researchers regarding priorities and concerns.
  • Identify and prioritize areas for sustained research in lipedema without artificial limitations.
  • Develop unbiased educational resources backed by scientific rigor.
  • Facilitate access to a diverse array of research participants spanning the globe.