Introduction

We offer our community members many types of groups/projects including:

  • Support groups for people dealing with certain issues and local groups based on geographic areas.

  • Interest and project groups related to certain topics or development projects.

  • Education groups and student groups for online courses.

  • Advocacy Groups that are general or focused on specific issues or audiences.

Current groups include:

  • Lipedema Education Group (LEG), a multidisciplinary team developing content and courses for consumers and health care professionals including Best Practice Guides and answers to Frequently Asked Questions. Health care professionals, researchers, and writers may Request to Join LEG (our only closed group); everyone may join LEG Collaborators (below).

  • LEG Collaborators Group is for anyone who is interested in following what LEG is doing and helping occasionally. Group members will get periodic updates on LEG projects and have opportunities to review draft documents, participate in polls, answer questions, and make suggestions. 

  • Lipedema in Young People Interest Group: LEG is developing a Lipedema Treatment in Young People Best Practice Guide for medical professionals (with Dr. Emily Iker) and coordinated guides for parents and children. This group is for parents, patients and professionals interested in this area.

  • Stage 1 Interest Group for patients interested in non-surgical fat reduction based on techniques used by one of our LEG members (see her FDRS 2024 presentation How I Lost 30 pounds of Lipedema Fat without Surgery or Exercise)--while keeping better records--to help us learn which changes are most important and help develop a best practice guide.

  • Lipedema Pump Group is for patients and therapists interested in using intermittent pneumatic compression (IPC) or advanced pneumatic compression pumps as part of lipedema care. Group members can help contribute to a best practice guide for medical professionals and a consumer guide.

  • Overcoming 2e Project is developing a new psychological guide for people with lipedema, lymphedema, or Dercum's that includes content from Overcoming the Emotional Challenges of Lymphedema by Elizabeth McMahon, PhD.

  • Advocacy Interest Group: for all lipedema, lymphedema or Dercum's Disease advocates. Join to benefit from cooperating with your peers.

  • Group Leaders Group: Interested in starting a support group (online, in-person, hybrid) or currently leading a group? Join this group for support and guidance from other group leaders, access to educational materials, ideas for meeting topics, and more.

Each group will have its own leaders. Community Space e-mail list, and other support tools.

If you are interested in forming a new group--or using our tools to make an existing group part of our community--please Request a Group/Project and we will help you with the process.