The Lipedema Project
The Lipedema Project is a nonprofit founded in 2014 that advances awareness, research, and education for lipedema, a chronic fat disorder primarily affecting women. It delivers free Kajabi-based online courses, a provider directory, the documentary "The Disease They Call FAT," and a global ambassador community across eight countries.
- Company typePrivate
- Founded2014
- HeadquartersCambridge, United States
- Headcount11–50
- GTM typeB2C
- OfferingServices
What The Lipedema Project does
The Lipedema Project is a private nonprofit research and education organization founded in 2014 by Catherine Seo, PhD and Mark L. Smith, MD, FACS. It operates as the research division of Lipedema Simplified, LLC, with headquarters in the Greater Boston area (offices listed in Cambridge and Somerville, Massachusetts) and a stated global reach spanning at least eight countries via ambassador networks. Its mandate is to advance awareness, clinical understanding, and research for lipedema, a chronic adipose tissue disorder that disproportionately affects women and is frequently misdiagnosed as obesity.
The organization's core product portfolio centers on original awareness and educational content. Anchoring assets include the documentary "Lipedema - The Disease They Call FAT" (premiered April 2015 at the First International Symposium on Lipedema in New York City, distributed via streaming, download, and DVD, with 4M+ views), three free online courses delivered on the Kajabi platform (Lipedema 101, Lipedema 102, and Setting the Research Agenda for Lipedema), the Professor Etelka Földi, MD Library of Lymphology, a self-assessment quiz, and a Provider Directory connecting patients with vetted specialists. A core strategic partnership with the Friedman Center for Lymphedema Research & Treatment at Mount Sinai Beth Israel underpins clinical credibility, and a comprehensive clinician-targeted textbook ("Lipedema-Principles and Practice of Diagnosis and Treatment") is scheduled for 2025 release.
The business model is freemium and donation-dependent. Courses are free; revenue flows from donations, documentary and eBook sales via Amazon/iTunes/Audible, a textbook fundraising program (donors of $100+ receive electronic copies), and recurring community programs including annual virtual conferences (Heart to Heart, Lipedema Congress 2025, Lipedema Surgery Simplified) and The Perrin Technique Certification Training. Customer segments split between women with or suspected of having lipedema (primary patient audience), healthcare providers and clinicians, researchers, and family/support networks — reached through website content, social media groups, ambassador-driven outreach, and email.
The Lipedema Project firmographics
Firmographics- Name
- The Lipedema Project
- Legal name
- The Lipedema Project, Inc.
- Website
- https://lipedemaproject.org
- Company type
- Private
- Founded year
- 2014
- Operating status
- Operating
- Headcount range
- 11–50 employees
- Short description
- The Lipedema Project is a nonprofit founded in 2014 that advances awareness, research, and education for lipedema, a chronic fat disorder primarily affecting women. It delivers free Kajabi-based online courses, a provider directory, the documentary "The Disease They Call FAT," and a global ambassador community across eight countries.
- Ownership category
- akta.pro rank
The Lipedema Project industry classification
Industry- Product category
- Healthcare Patient Education and Advocacy
- NAICS
- Voluntary Health Organizations (813212), Educational Support Services (61171), Research and Development in the Social Sciences and Humanities (54172)
- SIC
- Services-Educational Services (8200), Books: Publishing Or Publishing & Printing (2731), Services-Commercial Physical & Biological Research (8731)
- akta.pro primary industry
- Health & Medical Research Grantmaking Foundations (BPAGAKAL)
- akta.pro secondary industries
- Medical, Clinical & Biomedical Scholarly Publishing (EDAGAFAB), Medical & Clinical Reference (Physicians, Nursing, Allied Health) (EDAGAGAA)
Keywords
Where The Lipedema Project is headquartered
LocationHeadquarters
- HQ city
- Cambridge
- HQ country
- United States
- HQ region
- North America
Offices3 records
Markets served
The Lipedema Project business model
Business model- GTM type
- B2C
- Offering type
- Services
- Cost components
- Personnel, Marketing or Sales, Technology or R&D, Operations
Revenue model
- Donations and Textbook Fundraising: The organization relies on donations and fundraising campaigns, including textbook donation programs where contributors of $100+ receive an electronic copy of the upcoming textbook
- Educational Resources and Courses: Free online courses offered through Kajabi platform; documentary and eBook sales through Amazon, iTunes, and Audible.com
- Community Programs: Virtual events, MasterClass programs, and community-building initiatives
Pricing tiers
| Model | Billing | Price |
|---|---|---|
| Freemium | Pay-as-you-go | Free Online Courses - Lipedema 101, 102, and Research Agenda courses offered at no cost |
Go-to-market motion2 records
Distribution channels5 records
Marketing channels8 records
The Lipedema Project product offering
Product offeringCore offering
The Lipedema Project is a nonprofit research and education organization that produces and distributes free online courses, a documentary film, eBooks, a medical textbook, and a provider directory to raise awareness of lipedema and support patients and clinicians. It functions as the research division of Lipedema Simplified, LLC and combines patient education, clinician resources, and community-building initiatives.
Product overview
The Lipedema Project is a nonprofit research and education organization that operates as a platform of interconnected products and services focused on raising awareness, providing education, and advancing research for lipedema. The core portfolio includes: the documentary 'The Disease They Call FAT' (available on Facebook, Amazon, iTunes, Audible) and accompanying eBook for clinicians; a suite of three free online courses delivered via Kajabi covering introduction, solutions, and research agenda; the Lipedema Provider Directory to connect patients with specialists; the Do You Have Lipedema Quiz for self-assessment; the Professor Etelka Földi, MD Library of Lymphology containing curated research articles; annual virtual event conferences (Heart to Heart and Lipedema Surgery Simplified); and The Perrin Technique certification training for practitioners. The organization also publishes research on case definitions and is releasing a comprehensive medical textbook in 2025. The ecosystem is designed to serve patients, clinicians, and researchers through education, community support, and clinical resources.
Differentiator
Problem solved
Functional benefit
Brands
- Lipedema Simplified: Parent brand/platform providing education, resources, and community for lipedema patients and healthcare providers.
Products and services
- The Disease They Call FAT Documentary Award-winning documentary film produced by Catherine Seo about lipedema, following her journey discovering the disease and interviewing patients, doctors, and experts worldwide. Available for online streaming, download, or DVD purchase.
- Lipedema – The Disease They Call FAT eBook Practical overview of lipedema written with clinicians in mind, providing important information for healthcare providers who treat women. Available in Kindle, iBooks, print, and audiobook formats.
- Lipedema-Principles and Practice of Diagnosis and Treatment Textbook First comprehensive clinical textbook on lipedema diagnosis and treatment, authored with global experts; electronic copy offered to qualifying donors contributing $100 or more.
- Setting the Research Agenda for Lipedema Online Course Free online course reviewing diagnostic criteria, work-up, and differential diagnosis for patients with lipedema; covers surgical and non-surgical treatment options, physiology, and research opportunities. Developed for clinicians and the general public.
- Lipedema 101: An Introduction Online Course Free online introduction to lipedema covering patient experiences, symptoms, possible causes, diagnosis, and treatment, featuring patients, physicians, surgeons, researchers, and world experts. Designed for those with confirmed or suspected lipedema.
- Lipedema 102: A Solutions Forum Online Course Free online course presenting various methods to reduce the impact and stop progression of lipedema. Covers self-advocacy with healthcare providers, Manual Lymphatic Drainage (MLD) and Compression, lymphatic yoga, exercise, meditation, diet, nutrition, supplements, and surgical treatment options.
- Lipedema Provider Directory Online directory helping individuals find doctors and specialists who treat lipedema, enabling patients to locate qualified healthcare providers in their area.
- Lipedema Awareness Scale Assessment tool for measuring lipedema awareness levels and helping individuals evaluate potential symptoms.
- Do You Have Lipedema Quiz Interactive self-assessment quiz to help individuals determine if they may have lipedema based on symptoms and characteristics.
- Professor Etelka Földi, MD Library of Lymphology Extensive research library spanning many categories related to lymphology and fat disorders. Contains articles for physicians, therapists, researchers, advocates, and patients organized by topic areas including anti-fat bias, biology, compression therapy, differential diagnosis, and treatment.
- Heart to Heart Virtual Event Conference Annual 3-day virtual event conference featuring expert-led education, real patient experiences, and practical tools. Includes live Q&A sessions, patient panels, workshops, and access to private online community. Combines latest science on lipedema and lymphedema with holistic and surgical treatment strategies.
- Lipedema Surgery Simplified Virtual Event Virtual event focused on surgical treatment options for lipedema, featuring world-renowned surgeons, researchers, specialists, and real patient stories. Includes sessions on surgery pros and cons and patient panels of those who have undergone procedures.
- The Perrin Technique Certification Training Professional certification training program for The Perrin Technique, a manual lymphatic drainage approach developed by Dr. Raymond Perrin. Includes workshops and certification for practitioners.
Quantifiable outcome
- Documentary viewed over 4 million times, raising global awareness about lipedema
- +3 more outcomes
Companies that use The Lipedema Project
Customer profileNamed customers3 records
Segments4 records
Ideal customer profiles3 records
The Lipedema Project technology and API
TechnologyTechnology focussed No
API detail
- Has API
- No
- API docs
- API detail
Core technology
AI maturity
App detail
Feature3 records
The Lipedema Project partnerships and signals
Strategic signalPartnerships
One partnership is on record.
- Friedman Center for Lymphedema Research & Treatment at Mount Sinai Beth IsraelcoreThe Lipedema Project is a collaborative partnership between Lipedema Simplified, LLC and the Friedman Center for Lymphedema Research & Treatment at Mount Sinai Beth Israel. They co-produced the documentary 'Lipedema - The Disease They Call FAT' and work together on research, education, and treatment initiatives. Dr. Mark L. Smith serves as Director of the Friedman Center and co-founded The Lipedema Project.
Scale indicators5 records
Recent moves6 records
Expansion highlights6 records
The Lipedema Project competitors and assessment
Company assessmentDirect peers
- Lymphatic Education & Research Network: LE&RN is a nonprofit focused on lymphatic diseases including lymphedema and lipedema. It serves an overlapping patient and clinician community and runs education, advocacy, and research programs comparable to The Lipedema Project.
- Lipedema Foundation: The Lipedema Foundation is a US-based nonprofit dedicated to driving research, education, and awareness for lipedema. It is the most direct comparable to The Lipedema Project, with overlapping mission, patient audience, and clinician-researcher focus.
- Fat Disorders Research Society: The Fat Disorders Research Society is a nonprofit focused on research and awareness of lipedema and related fat disorders. Its mission, target patient population, and emphasis on clinical education make it a closely aligned peer.
- National Lymphedema Network: The National Lymphedema Network is a nonprofit providing education, advocacy, and resources for patients with lymphedema and related conditions including lipedema. It competes for the same patient and clinician audience.
- Lipedema Simplified: Lipedema Simplified is the patient-facing parent organization of The Lipedema Project, founded by Catherine Seo. It operates overlapping education, community, and events programs and shares leadership and audience with the project.
Broad incumbents
- Obesity Action Coalition: Obesity Action Coalition is a larger nonprofit serving people with obesity and related conditions. Lipedema patients are frequently misdiagnosed as obese, so the OAC is a broad incumbent addressing a partially overlapping audience with educational and advocacy resources.
Others
- Inspire (Lipedema Support Community): Inspire hosts The Lipedema Project's online support community and many other disease-specific patient communities. It is a platform peer/adapter rather than a mission peer, but materially relevant to the project's distribution and community infrastructure.
Market position
Strengths5 records
Weaknesses5 records
Competitive moat5 records
Key risks2 records
Key highlights7 records
Customer concentration
The Lipedema Project social profiles
Digital presenceThe Lipedema Project financial estimates
Financial estimateRevenue estimate
Valuation estimate
The Lipedema Project leadership team
Management profileNumber of profiles
Profiles2 records
The Lipedema Project funding detail
Funding detailFunding overview
Funding rounds
Investors
Funding detail is available on the Subscription and Enterprise plan.Contact sales →
The Lipedema Project M&A and investment
M&A and investmentM&A
Investments
M&A and investment is available on the Subscription and Enterprise plan.Contact sales →
Frequently asked questions about The Lipedema Project
What does The Lipedema Project do?
The Lipedema Project is a nonprofit research and education organization that produces and distributes free online courses, a documentary film, eBooks, a medical textbook, and a provider directory to raise awareness of lipedema and support patients and clinicians. It functions as the research division of Lipedema Simplified, LLC and combines patient education, clinician resources, and community-building initiatives.
Is The Lipedema Project a public or private company?
The Lipedema Project is a private company. It is classified as founder individual operated bootstrapped and is currently operating.
When was The Lipedema Project founded?
The Lipedema Project was founded in 2014. It employs 11 to 50 people.
Where is The Lipedema Project based?
The Lipedema Project is headquartered in Cambridge, United States, in the North America region.
How does The Lipedema Project make money?
Three revenue lines are on record. Donations and Textbook Fundraising is the primary driver. The others are educational Resources and Courses and community Programs.
Who are The Lipedema Project's main competitors?
Direct peers on record are Lymphatic Education & Research Network, Lipedema Foundation, Fat Disorders Research Society, National Lymphedema Network and Lipedema Simplified. Obesity Action Coalition is listed as a broad incumbent. Inspire (Lipedema Support Community) is listed as an others.
Does The Lipedema Project have an API?
No public API is recorded for The Lipedema Project.
What industry is The Lipedema Project in?
The Lipedema Project's product category is Healthcare Patient Education and Advocacy. Its primary akta.pro industry code is BPAGAKAL, Health & Medical Research Grantmaking Foundations, with a secondary code of EDAGAFAB, Medical, Clinical & Biomedical Scholarly Publishing. Its NAICS code is 813212 and its SIC code is 8200.