For many years, Lipoedema UK has been associated with the US based Lipedema Foundation. Formed in 2015 by Felicitie Daftuar, the Lipedema Foundation shares many of the same values as Lipoedema UK, such as to define, diagnose and support others with Lipoedema. It is for these reasons that our two organisations have been supporting each other from the beginning, with the Lipedema Foundation regularly sending members to speak at our annual Lipoedema conferences.
The Lipedema Foundation also supplies generous research grants to support collaborative research in developing treatments for Lipoedema. Recently, the Lipedema Foundation has developed the Lipedema Foundation Registry, an online database with the goal of learning more about Lipoedema; understanding barriers to diagnosis; better managing symptoms; assessing the quality of life impact; and developing new treatment approaches.
The initial survey that has been developed, with help from Lipoedema UK’s past questionnaires amongst other sources, aims to understand the direction of research that the Lipedema Foundation should fund next. The survey asks many questions surrounding both Lipoedema and other fat-based diseases, and is open to all sufferers of Lipoedema, as well as families of those affected, clinicians and researchers.
This is a research project that we whole-heartedly support, and we recommend all members of Lipoedema UK take part and encourage others to to do the same. This is your chance to have a say in powering the direction of Lipoedema research.