Resources for Learning More

Lipedema Foundation Key Resources

• 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.

• Our downloadable infographic includes key information related to presentation, common symptoms, prevalence, diagnosis challenges, common misdiagnoses, and treatment.

• The Lipedema Foundation Patient Self-Advocacy Guide is intended to help Lipedema patients in the United States navigate their healthcare journey.

Research Impact & Enrolling Studies

• Learn about enrolling studies using our Legwork clinical trial finder

• Learn about the impact of our funded research

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 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

• Created in partnership with the Milken Institute's Center for Strategic Philanthropy, the Giving Smarter Guide for Lipedema outlines the current epidemiology, health burden, diagnosis, and treatment procedures for Lipedema, and identifies key research opportunities.

International Treatment Guidelines

• Two good educational materials out of the UK include a physician training course, Early lipoedema diagnosis and the RCGP e-learning course, and the UK Best Practice Guidelines: The management of lipoedema 2017.

• The Dutch first published their Lipedema management Guidelines in Netherlands in 2014: Guidelines in the Netherlands and updated it in 2016 First Dutch guidelines on Lipedema using the international classification of functioning, disability and health. They also have a Patient Version available.

• The German Guidance Detailed View Lipedema was published in 2015.

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.

• 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

• LANA’s therapist listing clt-lana.org/search/therapists

• ALFP listing alfp.org/resources/map

• Klose Training listing klosetraining.com/therapist-directory

• Vodder School listing vodderschool.com/contacts/therapist

• Academy of Lymphatic Studies https://www.acols.com/find-therapist/

• Norton School of Lymphatic Therapy https://www.nortonschool.com/therapist-referrals.html

• Monarch CE https://www.monarchce.com/

• National Lymphedema Network http://www.lymphnet.org/find-treatment

• The American Board of Venous and Lymphatic Medicine directory abvlm.org/search_instructions.php  

• Chikly Health Institute https://chiklyinstitute.com/find-a-therapist

• Social Media (see next section)

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

• See our About Lipedema page.

How to Connect with Lipedema Foundation

• In order to receive notifications of new information, videos and conferences, be sure to Like us on Facebook, Follow us on Twitter, Subscribe to the FDRS YouTube channel, and join our Maillist.