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.
- ERISA Facts Not Fallacies
Safe space for patients to ask questions and better understand how to obtain their commercial benefits for treatments like Lipedema, Dercums Disease, Oncology, Orthopedic, Cardiology, Reconstructive, OB/GYN, and more. - 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. - ERISA Advocacy
Provides expert help navigating insurance, ERISA law, and claim denials for all types of healthcare with over a decade of successful ERISA recovery and denial overturn at affordable prices. - 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.
The Lipedema World Alliance
The Lipedema World Alliance (LWA) is a global organization committed to improving the lives of those affected by lipedema through advocacy, education, and research. As a leading authority on lipedema, the LWA collaborates with healthcare professionals, researchers, and patient communities to foster a better understanding of this condition and promote effective treatments.
The Lipedema World Alliance Mission
- Advocacy: We strive to raise awareness about lipedema among healthcare providers, policymakers, and the general public to ensure early diagnosis and appropriate treatment.
- Education: We provide comprehensive educational resources for patients, caregivers, and healthcare professionals to enhance understanding and management of lipedema.
- Research: We support and conduct research to advance knowledge of lipedema, develop new treatments, and ultimately find a cure.
For Patients and Caregivers
- Educational Materials: Access a wide range of articles, videos, and webinars that explain lipedema, its symptoms, stages, and treatment options.
- Support Groups: Join the online community to connect with others who understand the challenges of living with lipedema. Share experiences, gain support, and find encouragement.
- Treatment Information: Learn various treatment approaches, including conservative management, surgical options, and emerging therapies.
For Healthcare Professionals
- Clinical Guidelines: Stay updated with the latest clinical guidelines and best practices for diagnosing and treating lipedema.
- Training and Workshops: Participate in training sessions and workshops designed to effectively enhance your skills in managing lipedema patients.
- Research Collaborations: Engage in research initiatives to advance the understanding of lipedema and improve patient outcomes.
Join the Lipedema World Alliance
By becoming a member of the Lipedema World Alliance, you can contribute to the mission of advocacy, education, and research. Membership benefits include access to exclusive resources, networking opportunities with experts in the field, and the ability to participate in our initiatives and events.
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.
