Lipedema Community & Support Resources

You don’t have to face lipedema alone. Whether you’ve just been diagnosed or are years into your journey, finding accurate information and connecting with others who truly understand can make all the difference. At Lipedema.net, we believe in empowering women with lipedema through knowledge, support, and connection.

This page is dedicated to curated forums, advocacy groups, and community spaces where you can find trustworthy information, share your story, and build a support network. Explore the resources below to stay informed, connected, and inspired.

Instagram Support & Advocacy Accounts

Follow these accounts for inspiring patient stories, advocacy updates, research breakthroughs, and everyday encouragement.

• @lipedema_fndn – Lipedema Foundation
  Highlights current research, medical conferences, and global initiatives.
  
• @fatdisorders – Fat Disorders Resource Society
  Shares patient stories, infographics, and advocacy tips.
• @lipedemaworldalliance – Lipedema World Alliance
  A global perspective on patient needs and international research efforts.
• @americanlipedemaassociation – American Lipedema Association (ALA
  Patient advocacy group advocating for Lipedema awareness, treatment, and better coverage and support for the Lipedema community.
• @lipedemasurgicalsolutions – Lipedema Surgical Solutions
  Shares both surgical and non-surgical treatment options, tips for living with Lipedema, and lipedema news.

Facebook Groups & Pages

Join Facebook communities where thousands of women with lipedema gather to exchange advice, share challenges, and celebrate progress.

• Fat Disorders Resource Society Facebook Page
  One of the most active and well-known organizations in the space.
  
• Lipedema Sisters USA Private Group (Request to Join)
  Safe and supportive space for women with lipedema in the United States.
  
• Lipedema Fitness Community
  Focused on movement, strength, and body confidence with lipedema.
  
• Lipedema Surgical Solutions
  Page’s primary focus is on peer-reviewed medical research recommendations for treating and living with lipedema.
  

Online Communities & Forums

Sometimes the most valuable insights come from others who’ve walked the same path. These forums offer space to ask questions, discuss treatments, and navigate healthcare systems like Medicare.

• Reddit: Caution About Lipedema Coverage Scams
  A discussion on insurance scams and what to avoid.
  
• Reddit: Experiences With CoverLipedema.com
  Community members share recent developments.
  
• Reddit: Experiences With Medicare
  Valuable info on navigating Medicare with a lipedema diagnosis.
  
• HealthUnlocked Lipedema Forum
  A large global support network offering emotional support and peer-led guidance.

Professional & Research Organizations

These organizations are leading the way in lipedema education, funding studies, and supporting women with fat disorders.

• American Lipedema Association
  Community of individuals affected by lipedema, along with medical professionals, researchers, and advocates, united in raising awareness and understanding of this underdiagnosed loose connective tissue disorder.
• Lipedema Foundation
  Dedicated to advancing the understanding of lipedema through research and collaboration.
  See their latest updates on LinkedIn
• Fat Disorders Resource Society (FDRS)
  Offers webinars, conferences, and resources for patients, caregivers, and clinicians.
  
• Lipedema Simplified
  Provides educational content, online courses, and the Lipedema TRIBE community for emotional and peer support.

You Are Not Alone

Living with lipedema can feel isolating, but it doesn’t have to be. Whether you’re seeking emotional support, medical guidance, or others who just get it, these communities offer a powerful reminder: you’re part of a global network of women advocating for better care, deeper understanding, and greater visibility.

Bookmark this page and return as often as needed. We’re always updating it with the latest resources to support your journey.

Know a helpful resource or support group that’s not listed?
Email us at info@lipedema.net and we’ll review it for inclusion.