Resources for Learning More

Lipedema foundation brochure

  • The Lipedema Foundation Brochure features key questions that patients may have about lipedema. If you would like hardcopies of the brochure, fill out this form and include an address and quantity.

Research Impact & Enrolling Studies

Fat Disorders ResOurce Society (FDRS)

  • There is a patient advocacy group called FDRS. They host annual patient conferences that bring the latest news to all. FDRS's temporary website contains a lot of information. Their old website had more information and must be accessed through the Google WayBack machine currently. Their Facebook Page contains announcements and their Maillist announces important happenings.

  • Their Symptoms page provides a complete list of reported syptoms, which can also be accessed through the Google Wayback machine.

  • FDRS's YouTube channel has videos, including diagnosing, conference talks, and self-care tools. Start with the Primer and Diagnosing Part 2 videos.

  • Their Treatments Diagram is an especially useful tool to show what patients can do for themselves while waiting for diagnosis and treatment.

Lipedema Disease Landscape Report

International Treatment Guidelines

CME (Continuing Medical Education)

Medications and Supplements List

Nutrition Guidelines & Resources

  • The Lymphedema and Lipedema Nutrition Guide book is an amazing, well-researched resource that helps people identify practicable changes to eat healthier foods that support people with lipedema and lymphedema.

  • Chef Michele Ligouri has put together a set of recipes that tries to follow the guidelines in the book and is aimed for a busy family with divergent health needs.

  • Several FDRS YouTube videos discuss multiple nutrition plans, including RAD, Ketogenic diets, paleo and others.

Photo Stories of Lipedema

  • The Photo Gallery of Lipedema patients has about 500 photos displaying the effect this disease has had on many bodies and some of the many variations in these diseases.

Finding treatment

Private Social Media Resources <-- Best place for general Q&A, and local recommendations

  • There are many private Facebook groups, and we highly recommend joining some of them to ask your questions there, especially where to find caregivers close to you. Go to Facebook and search on Lipedema and Lipoedema. The best large group is the Lipedema Sisters USA group.

Medical Coding

How to Connect with Lipedema Foundation