There has been very little in the way of lipedema research since lipedema was first named by Drs Allen and Hines at the Mayo Clinic in 1940. The lack of research and understanding about this fat disorder has contributed to its common misdiagnosis. Interest in lipedema and lymphatic disorders has increased in recent years, and study in these areas is beginning to grow. The Lipedema Think Tank 2015 which took place at the Symposium was critical in establishing a network of professionals who are interested and engaged in this work. Links and information to the latest developments in lipedema and lymphatic research can be found here. Be sure to check back regularly for updates.
Lipedema Think Tank 2015
Under the direction of Mark L. Smith, MD, FACS, the Lipedema Think Tank 2015 was an opportunity for clinicians, researchers and patient advocates across many disciplines to come together to share knowledge, brainstorm, and develop a research agenda to advance our understanding of lipedema and move towards a cure.
Click here for Think Tank video and participant details…
National Lymphatic Disease and Lymphedema Registry
Stanley G. Rockson, MD, is the Principal Investigator for the LE&RN International Lymphatic Disease and Lymphedema Registry. The purpose of the Registry is to collect health information in order to study the disease classification, natural history, and impact of all lymphatic diseases, including lipedema, along with the treatments and medical outcomes for lipedema.
For more information…
Lymphatic Education & Research Network (LE&RN)
Lymphatic Education & Research Network (LE&RN) is a nonprofit organization founded in 1998 to fight lymphatic disease and lymphedema through education, research and advocacy. We seek to accelerate the prevention, treatment and cure of the disease while bringing patients and medical professionals together to address the unmet needs surrounding lymphatic disorders, which include lymphedema and lipedema.
David Zawieja, PhD; Stanley Rockson, MD; Kathy Bates; Sen. Charles Schumer (NY); William Repicci
To accomplish these goals, LE&RN sponsors research fellowship grants, a national patient registry and tissue bank, bi-monthly live-stream symposiums, the peer-reviewed journal Lymphatic Research & Biology, weekly e-newsletters, scholarship grants to lymphedema therapists, conference travel awards to young researchers, and a vibrant website with features such as Ask the Experts, connecting patients with the field’s more renowned practitioners. In 2015, LE&RN began establishing State Chapters in the USA, as well as International Chapters.
For more information…
The Lipedema Foundation & TREAT Program
After the collective work of the Think Tank, participants Karen L Herbst, PhD, MD and Felicitie Daftuar founded the Lipedema Foundation in August 2015 and the Treatment, Research & Education of Adipose Tissue (TREAT) Program at the University of Arizona Health Sciences College of Medicine in Tucson in 2016. The Lipedema Foundation is funding basic and translational research projects at top-tier universities and hospitals in order to define, diagnose and treat lipedema and related conditions.
For more information…
About The Lipedema Project
The Lipedema Project was founded in 2014 by Dr. Mark L. Smith, MD, FACS and Catherine Seo, PhD to begin the research and treatment for lipedema, a chronic fat disorder. Lipedema is a disease involving abnormal fat deposition that can result in pain, immobility, and lymphatic disturbances. Lipedema progresses over time often developing lymphedema, a chronic condition called lipolymphedema.
With obesity reaching epidemic proportions and anti-fat bias prevalent in healthcare, it becomes critical that patients are correctly diagnosed, that resources are invested in understanding this disease and how it can be treated, and that patients have the support, knowledge, and options to manage these chronic conditions.
Currently, The Lipedema Project, Inc. is a 501(c)3 non-profit organization devoted to increasing awareness and providing education, research, and treatment for lipedema through online and face-to-face programs and building community.
The lipedema documentary is available for viewing on Facebook, Lipedema – The Disease They Call FAT.
The book is available on Amazon, Lipedema – The Disease They Call FAT: An Overview for Clinicians.