Support, Education & Advocacy
Mission: Our lipedema community (Lipedema.com) is dedicated to improving the lives of individuals affected by lipedema, lymphedema, or Dercum’s Disease through support, education, and advocacy. Our mission is to increase awareness of these conditions, improve access to effective care, foster a sense of community for all affected, and promote research into better treatments. Our members and leaders include patients, health care providers, caregivers, researchers, and suppliers.
Join today, individual membership is free: Join Lipedema.com.
Problem Statement: The lack of a national organization leaves individuals with these conditions isolated, without a unified voice to address their unique challenges. It hampers collaborative efforts, impedes research progress, and diminishes the collective strength required to bring about positive change. Bridging this gap is imperative to ensure that the millions of people dealing with lipedema, lymphedema, or Dercum’s Disease in the United States have the support, education, and advocacy they need and can participate in global initiatives to improve their quality of life.
The establishment of a dedicated membership organization is not just a necessity; it is a pivotal step towards building a more informed, empowered, and connected lipedema, lymphedema, and Dercum’s Disease community in the United States.
Vision: Our vision is for a thriving community that supports and represents the diverse voices of those affected by lipedema, lymphedema, or Dercum’s Disease. We envision an organization that will speak with a collective voice that is empowered, and influential on the global stage to actively shape medical practices, insurance decisions, and legislative policies affecting our lives.
We aspire to be a catalyst for change to ensure that every patient is recognized, supported, and empowered to navigate their healthcare journey. By fostering unity and collaboration, we seek to elevate the collective strength of our community to unprecedented levels.
Plans: We are creating a nonprofit educational organization that will provide:
Support including online support groups, interest groups, and project groups tailored to many different interests (see Groups/Projects for details) via our online members only Community and other online features. If you are interested in starting a group--or making an existing group part of our community--please Request a Group/Project and we will help you with the process.
Education for medical professionals and consumers including best practice guides, tutorial content, and online courses developed by our Lipedema Education Group(LEG) and others. Educational materials will be published on our websites, as books (paper and e-book), in articles placed in open access medical journals, on social media, and mass media to make them easily accessible to all.
Advocacy on behalf of our community members to promote early diagnosis and access to care.
Partnerships with compatible organizations.
Lipedema World Alliance membership as a nonprofit dedicated to fighting Lipedema and/or related pathologies with members and leaders who are patients, family members, caregivers, or professionals.
Online Directory of service providers, relevant products, vendors, and much more.
Next steps include:
Attracting more members, leaders, and partner organizations including patients, caregivers, health care professionals, researchers, vendors and service providers.
Transitioning Lipedema.com into a nonprofit educational organization. Currently Lipedema.com is supported by Lymph Notes.
Expanding the community features, groups, educational content, and online courses offered on our website.
Team:
Susan O’Hara: advocate, author, blogger (www.Legslikemine.com), and entrepreneur.
Kasi Grosvenor, MBA, Lipedema patient and advocate.
Linda-Anne Kahn, CMT, CLT-LANA, CHNC, therapist, educator, and Lipedema SOC Committee Member.
Chuck Ehrlich, MS, MBA, researcher, writer, publisher for Lymph Notes, leader of the Lipedema Education Group, and Lipedema SOC Committee Member.
Cristina Lella, Lipedema patient and awareness advocate.
Join today, individual membership is free: Join Lipedema.com. You can also select Groups/Projects in our Community based on your specific interests, see Groups/Projects.
Please use the form below to let us know how you would like to help. We are looking for:
An executive director, community group leaders, and other team members.
Additional board members (including medical and IT advisory boards).
Supporters and sponsors including service providers and vendors.
Partner Organizations.