LF is at the Lipedema World Congress in Rome!
As a sponsor of the 2025 Lipedema World Congress, the Lipedema Foundation is proud to participate in this global gathering, presenting new research, sharing insights across multiple sessions, and serving on the Scientific Committee.
Don’t miss our featured speakers! Access the full program.
Wednesday, November 5, 2025 - 2:00 pm - 5:30 pm Patient associations in comparison: how to share experiences in the common interest (Laura Harmaceck, Scientific Programs Officer)
Friday, November 7, 2025 - 8:45 am - 10:25 am Quality of life and symptomatic improvement for people with lipedema using GLP1 ra medication: a survey of over 2500 participants (Jesse Cochrane, Vice President, Research)
Saturday, November 8, 2025 - 11:00 am - 11:15 am Biobanks, Standardized Data & 3,000 Parameters: Fast-Tracking Discovery (Jonathan Kartt, Chief Executive Officer)
Saturday, November 8, 2025 - 3:45 pm - 5:00 pm Panel Discussion on Future Research (Jonathan Kartt [Chair], Jesse Cochrane [Expert Panel])
In addition to our presenters, Felicitie Daftaur (Founder), Stephanie Galia (Associate Director, Special Projects), and Stephanie Peterson (Consultant) will also be onsite throughout the Congress. Please stop by our exhibit and meet the team.
About the Foundation
The Lipedema Foundation is a private, non-fundraising foundation established in 2015 to define, diagnose and develop treatments for Lipedema. It has awarded more than $12.5 million in the US and internationally to date and maintains the Lipedema Foundation Registry.
The Lipedema Foundation is a private, non-fundraising organization established in 2015 to define, diagnose and develop treatments for Lipedema. It has awarded more than $13.6 million to date, funding 64 research studies with partners at 55 institutions in 10 countries. In 2025, the Lipedema Foundation launched the Lipedema Foundation Biobank to support research into the causes, diagnosis, and treatment of Lipedema, and continues to maintain the Lipedema Foundation Registry. Meet the team!
Timely Content
Common Case Report Form (CCRF)- Coming Soon!
Is there edema in Lipedema? See our blog about what the research says.
Research Resources
The Lipedema Foundation Biobank is a new initiative created to support research into the causes, diagnosis, and treatment of Lipedema. By collecting and securely storing biospecimens and health information from individuals with Lipedema and related conditions, the Biobank will become a resource for scientists working to better understand this complex disease.
Need samples for research? Learn more here.
Review Lipedema Foundation’s Lipedema Research Roadmap, which recommends action to grow and strengthen Lipedema Research.
Lipedema Foundation has funded $13.6M in research, across 64 studies with research partners at 55 institutions in 10 countries. Learn about our recent projects.
Looking for Lipedema research papers? Our on-line Legato Library makes it easy to search for Lipedema research by keyword, topics, and more.
The First Look Report features the findings of the Registry survey from data provided by 521 participants with Lipedema.
The Lipedema Research Idea Database is a living tool to capture and share research questions, hypotheses, and ideas.
Please submit one idea, question, or hypothesis per form submission.
Clinician & Patient Resources
Access the Clinician’s Guide, information about diagnosis and ICD-codes, treatment information, and many more resources on our For Clinicians page.
Request free print copies here.
Treatments- Coming Soon!
Provider Directory- Coming Soon!
Sign up for the Lipedema Foundation Registry! Participation in our Registry helps support scientific research to improve the life of Lipedema patients.
Want to participate in research studies? If you wish to learn about clinical research studies and patient surveys that are seeking Lipedema patients, check out our LegWork Clinical Trial Finder.
Our Patient Self-Advocacy Guide is intended to help Lipedema patients as they navigate their healthcare journey. Though there is currently no cure for Lipedema, we believe that every person deserves a timely diagnosis, disease-specific care, and other forms of support.
Lipedema Education Resources
The session Unmasking Lipedema in Obesity: Key Diagnostic Tips & Proven Management Strategies for Better Care, recorded from the 2025 OMA conference, provides an overview of Lipedema, featuring insights from LF’s Professional Educational Manager and occupational therapist (CLT) Courtney Mascio, patient/advocate Sarah Bramblette, and obesity medicine physician Dr. Celia Egan, combining decades of experience in identifying, treating, and living with the condition.
Download or order free copies of Lipedema Foundation Brochure, which features key questions that patients may have about Lipedema. Download or order free brochures or Clinician’s Guides here.
The ‘What is LIpedema?’ video features descriptions about Lipedema symptoms, diagnosis challenges, and related disorders.
