The Lipedema Foundation is a private, non-profit organization whose main focus is funding research to define, diagnose and develop treatments for Lipedema. They are the largest funder of Lipedema-focused research worldwide. Learn more about their work to build research infrastructure and increase awareness about Lipedema, particularly among healthcare professionals. Details for connecting with them on social media, as well as links to a variety of their helpful resources for patients and clinicians are included below.
What is the purpose of the Lipedema Foundation?
The Lipedema Foundation (LF) was founded to support the research field in defining, diagnosing and developing treatments for Lipedema. We are the largest funder of Lipedema-focused research, having funded $12.5 million of research to date in the U.S. and internationally.
Much of our work is currently focused on gaining a better understanding of Lipedema, defining the biology of the disease and improving diagnosis.
In addition to funding research, we also work to build research infrastructure. Our current infrastructure efforts include: the LF patient registry, which has 4,096 participants to date; a grant to Vanderbilt University Medical Center to create a Lipedema biobank; and the LEGWORK Clinical Study Finder designed to connect patients to studies actively recruiting participants. We also created the LF Legato library, which is a comprehensive and up-to-date archive of research publications specifically related to Lipedema. Finally, we are proud to be a patient-founded organization, and we have people with Lipedema on staff.
In what ways does LF support lipedema patients?
While we are not directly involved in patient advocacy and support, we provide materials and resources to help patients advocate for themselves and make informed decisions regarding their care. We also work to increase healthcare provider awareness by providing support for diagnosis and treatment.
How does LF promote awareness of Lipedema within the medical community?
The Foundation helps promote awareness among healthcare providers in a variety of ways: exhibiting and speaking at medical conferences, developing clinician-specific resource guides and web pages, networking with clinicians who can help us spread the word about Lipedema, and collaborating with professional societies. In October 2023, we were excited to partner with the Obesity Society to curate a Lipedema-focused CME session offered at ObesityWeek.
We aspire to grow our professional education efforts to work with medical schools so that Lipedema education is included in curriculums in the coming years. We welcome collaboration from any individuals who can assist in that effort.
What resources are available to patients via the Foundation?
LF has a number of resources available to patients, including:
View more on our Resources page. We are also very excited to announce the launch of our Provider Directory, which includes self-reported therapists treating patients with Lipedema. Patients can search for therapists within their state, and see the therapist’s credentials, contact information, affiliated organization and types of treatments offered. We are hoping this resource will help patients make more informed decisions regarding their care and take more effective action in the management and/or treatment of their condition.
We also recently launched a new Clinician’s Guide. While this resource is aimed specifically at clinicians, patients may find it useful in helping to educate their own healthcare providers.
How can patients and clinicians connect with the Foundation?
Patients and clinicians can sign up for our newsletter or follow us on our social media channels: Facebook, X (formerly Twitter), Instagram and LinkedIn.
We also encourage patients to reach out with any general questions or comments to info@lipedema.org and clinicians to clinicians@lipedema.org.
What are the Foundation’s key focus areas or goals for 2024?
This year, LF is very excited to focus efforts on growing biosample resources by continuing to support the buildout of the first-ever Lipedema Biorepository at Vanderbilt Medical Center and by establishing a separate biobank. We also hope to continue to grow our therapist Provider Directory, as well as expand this resource to include other types of clinicians (diagnosing providers, surgeons, etc.) If patients have a clinician we should know about, please email us with their information at clinicians@lipedema.org. LF also hopes to continue growing our relationships with professional medical organizations and other partners to continue increasing clinical awareness.
What else should Lipedema patients know about the Foundation?
In 2019, the Lipedema Foundation launched an online registry designed to help the Lipedema community, including affected individuals, families, clinicians and researchers. Its goals are to: learn more about Lipedema, understand barriers to diagnosis, better manage symptoms, assess quality of life impact and develop new treatment approaches. As more individuals complete the survey, it will hopefully provide direction for what types of research we should fund next. The survey takes around 60 minutes to complete, and is easiest to navigate on a computer or laptop. People with and without Lipedema are encouraged to join. See more about the registry here.
We hope our resources will help to empower patients to advocate for themselves—with their medical teams, but also to friends, family and anyone who will listen! Awareness is key!
Lastly, an exciting new research update: Dinnendahl et al. have recently published a foundational paper on pain in Lipedema. This research, conducted in the lab of LF awardee Dr. Tim Hucho, investigates pain and Lipedema using quantitative sensory testing (QST). Studies show altered sensory profiles in Lipedema patients, suggesting pain in Lipedema patients is largely somatic, rather than psychosomatic, in origin. This research could lead to better ways of diagnosing and treating Lipedema in the future using pain thresholds as an early diagnostic, and substantiates quantitatively what Lipedema patients have long reported: that their pain is real.
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