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.

• In early 2019, the Lipedema Foundation launched the Lipedema Foundation Registry — an initial confidential survey to help understand the condition. In 2022, we were ecstatic to share the Registry First Look report, providing perspective on the diverse experiences of people with Lipedema.

Research & Enrolling Studies

• Learn about enrolling studies using our Legwork clinical trial finder

• Learn about the impact of our funded research

• Visit our Legato Library to see a comprehensive and up-to-date archive of research publications specifically related to Lipedema

Best practice Guidelines

• In 2017, the Lipedema Foundation, in partnership with Milken Institute's Center for Strategic Philanthropy, worked to create the Giving Smarter Guide for Lipedema outlining epidemiology, health burden, diagnosis, and treatment procedures for Lipedema, and identified key research opportunities.

• Since then, several countries, including the United States, have developed best practice guidelines for Lipedema, listed here:

  • US Standard of Care (2021)

  • Spanish Consensus Document (2018)

  • UK Best Practice Guidelines (2017)

  • Dutch Guidelines (2017)

  • German Guidelines (2017)

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

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 this condition.

Patient support groups

• One of the best ways to find support, ask questions and seek recommendations for local treatment options is to connect with others living with Lipedema. The following groups are a great place to start:

  • Lipedema Sisters USA Facebook Group

  • Lipedema Patient Roundtable (Zoom meetings)

  • Lipedema Fitness Facebook Group

Fat Disorders ResOurce Society (FDRS)

• FDRS is a patient advocacy group that hosts annual conferences to highlight the latest research findings and information related to Lipedema. Check out FDRS's website and FDRS's YouTube channel for more information.

social media

• To stay up to date on the latest information and news on Lipedema, be sure to:

• Like us on Facebook

• Follow us on Twitter

• Follow us on Instagram

• Follow us on LinkedIn

• Join our Mail list