Name

Lipedema Foundation

Legal name

The Lipedema Foundation

Website

https://lipedema.org

Company type

Private

Founded year

2015

Operating status

Operating

Headcount range

1–10 employees

Ownership category

akta.pro rank

Product category

Nonprofit Medical Research Foundation

NAICS

Grantmaking Foundations (813211), Voluntary Health Organizations (813212)

SIC

Services-Commercial Physical & Biological Research (8731)

akta.pro primary industry

Health & Medical Research Grantmaking Foundations (BPAGAKAL)

akta.pro secondary industry

Research & Science Grantmaking Foundations (BPAGAKAI)

Keywords

• Medical research funding
• Lipedema advocacy
• Patient registry services
• Clinical research grants
• Biobank operations

Headquarters

HQ city

New York

HQ country

United States

HQ region

North America

Offices1 record

Markets served

GTM type

B2C

Offering type

Services

Cost components

Operations, Technology or R&D, Personnel, Marketing or Sales, Others

Revenue model

1. Foundation Funding: As a US 501c3 non-profit and 509a private family foundation established in 2015, the Lipedema Foundation funds research through grant programs. They are the world's largest funder of Lipedema research, with over $13.6M awarded to fund 64 research studies yielding 74 publications. Revenue model is not applicable as they are a private foundation that provides funding rather than generates revenue.

Go-to-market motion1 record

Distribution channels4 records

Marketing channels7 records

Core offering

The Lipedema Foundation is a US-based non-profit foundation that funds, directs, and accelerates research on lipedema, a chronic fat disorder. It operates a patient registry and tissue biobank, publishes educational guides for patients and clinicians, maintains a curated scientific library, runs a research grants program, and provides a clinician directory and clinical study finder for the lipedema community.

Product overview

The Lipedema Foundation operates a suite of interconnected research and educational products rather than a traditional commercial software platform. The core offerings include the Lipedema Foundation Registry (an online patient registry with over 5,550 participants), the Biobank (containing samples from 74 participants), and a Research Grants Program that has funded 64 studies yielding 74 publications. These are supported by educational products including the Legato Library (research publications database), Clinician's Guide, Patient Self-Advocacy Guide, Provider Directory, and the Legwork Clinical Study Finder. The Foundation also publishes an annual First Look Report analyzing registry data. The organization distributes educational materials including 375,800 brochures and 15,000 Clinician's Guides to raise awareness and improve diagnosis of this chronic medical condition.

Differentiator

Problem solved

Functional benefit

Products and services

• Lipedema Patient Registry Online registry where individuals with lipedema provide health and symptom data to support research; has enrolled 5,550 participants.
• Lipedema Biobank Tissue biobank storing biological samples from lipedema patients to support research; has 74 biobank participants.
• Legato Library Curated digital library of scientific publications relevant to lipedema research and treatment.
• Research Grants Program Funding program providing grants to researchers and institutions for lipedema studies; $13.6M committed across 64 studies and 55 institutions in 10 countries.
• Patient Self-Advocacy Guide Educational resource helping lipedema patients navigate diagnosis, treatment, and care decisions.
• Clinician's Guide Educational reference for healthcare clinicians on recognizing, diagnosing, and managing lipedema.
• Provider Directory Directory helping patients locate clinicians experienced in diagnosing and treating lipedema.
• Legwork Clinical Study Finder Search tool to help patients find active clinical studies related to lipedema.
• First Look Report Periodic analytical report distilling registry findings and trends for the lipedema community and researchers.

Quantifiable outcome

• $13.6M in research funded across 64 studies yielding 74 publications
• +1 more outcomes

Named customers3 records

Segments3 records

Ideal customer profiles3 records

Technology focussed No

API detail

Has API

No

API docs

API detail

Core technology

AI maturity

App detail

Partnerships

25 partnerships are on record, tiered core and minor.

• Vanderbilt University Medical CentercoreStrategic or Co-development PartnerMulti-disciplinary collaboration including Manus Donahue, Rachelle Crescenzi, Paula Donahue, Joshua Beckman for imaging science and vascular physiology research on molecular tissue profiles and lymphatic clearance in Lipedema patients.
• University of South AustraliacoreStrategic or Co-development PartnerPartnership with Natasha Harvey, Hamish Scott, and Neil Piller investigating the genetic and developmental basis of Lipedema through genome sequencing and RNA sequencing.
• Massachusetts General HospitalcoreStrategic or Co-development PartnerCollaboration with Barbara Pober studying Williams Beuren syndrome as a model for revealing genetic contributions to Lipedema.
• St George's University of LondoncoreStrategic or Co-development PartnerPartnership with Rene Haegerling using VIPAR light-sheet microscopy for 3D histopathology diagnostic approach and with Pia Ostergaard for genetic research.
• University of ColognecoreStrategic or Co-development PartnerCollaboration with Tim Hucho and Rebecca Dinnendahl on identifying Lipedema-pain specific sensory measures as basis for future diagnostics.
• University of Texas Health Sciences Center at HoustoncoreStrategic or Co-development PartnerPartnership with Eva Sevick-Muraca using near-infrared fluorescence lymphatic imaging to characterize lymphatic function and adipose deposition in early Lipedema.
• Georgia Institute of TechnologycoreStrategic or Co-development PartnerCollaboration with J. Brandon Dixon and Kim To on activating calcium channels to improve lymphatic function using nanoparticle-based delivery.
• Ludwig Boltzmann Institute for TraumatologycoreStrategic or Co-development PartnerPartnership with Susanne Wolbank and Eleni Priglinger developing EV-miRNAs as diagnostic biomarkers for Lipedema.
• American College of CardiologycoreStrategic or Co-development PartnerACC published competencies recognizing Lipedema as distinct entity from lymphatic disorders, acknowledging the condition in vascular medicine training standards.
• Fat Disorders Research Society (FDRS)minorStrategic or Co-development PartnerHistorical connection through founder Felicitie Daftuar's past presidency; collaborative research participation at annual conferences.
• University of ArizonacoreStrategic or Co-development PartnerPartnership with Karen Herbst on TREAT Program including biobank, imaging, and patient treatment research.
• University of Texas Southwestern Medical CentercoreStrategic or Co-development PartnerCollaboration with Philipp Scherer on adipose stem cells and lipedema pathophysiology research.
• Texas A&M UniversitycoreStrategic or Co-development PartnerPartnership with Joseph Rutkowski on VEGF-D induced lymphangiogenesis and lymphatic dysfunction research.
• Washington University School of MedicinecoreStrategic or Co-development PartnerCollaboration with Samuel Klein and Vincenza Cifarelli on adipose tissue biology and weight loss effects in women with Lipedema.
• University of California Los Angeles (UCLA)coreStrategic or Co-development PartnerPartnership with Bruno Péault on mesenchymal progenitor cells in Lipedema.
• University of ChicagocoreStrategic or Co-development PartnerCollaboration with Lev Becker and Melody Swartz on microenvironmental cues, exosomes, and macrophage research in Lipedema.
• Harvard UniversitycoreStrategic or Co-development PartnerPartnership with Tim Padera (Co-Chair of Scientific Advisory Committee) on lymphatic research.
• University of VirginiacoreStrategic or Co-development PartnerCollaboration with Rachelle Crescenzi and Brant Isakson on dysfunctional gap junction communication and MRI research.
• University of GoettingencoreStrategic or Co-development PartnerPartnership with Epa Gousopoulos and Gunther Felmerer on pathophysiology tissue bank research.
• Macquarie UniversitycoreStrategic or Co-development PartnerPartnership with Louise Koelmeyer using ICG lymphography and bioimpedance spectroscopy for Lipedema diagnosis.
• St Vincent's Institute for Medical ResearchcoreStrategic or Co-development PartnerPartnership with Ramin Shayan and Tara Karnezis investigating immune cells as biomarkers and therapeutic targets.
• University of PadovacoreStrategic or Co-development PartnerCollaboration with Carla Stecco, Caterina Fede, and Carmelo Pirri on fascial alterations in Lipedema.
• University of LeipzigcoreStrategic or Co-development PartnerPartnership with Matthias Blüher and Pamela A. Nono Nankam on single-cell mechanisms underlying Lipedema development.
• University Hospital ZurichcoreStrategic or Co-development PartnerCollaboration with Epameinondas Gousopoulos on CD163 biomarker diagnostic and therapeutic potential.
• Klinikum Ernst von Bergmann gGmbHcoreStrategic or Co-development PartnerPartnership with Philipp Kruppa on MRI morphological investigation and gene expression biomarkers.

Scale indicators6 records

Recent moves6 records

Expansion highlights5 records

Direct peers

• Lymphatic Education & Research Network: Direct peer as a disease-specific research grantmaking organization focused on lymphatic conditions, frequently co-cited with Lipedema due to overlapping adipose-lymphatic pathology and overlapping clinical/research communities.
• Fat Disorders Research Society (FDRS): A small disease-focused research society covering lipedema and related fat disorders; the Lipedema Foundation's founder Felicitie Daftuar is a past president, and both organizations run overlapping research conferences and registries.
• National Lymphedema Network: A patient-and-research nonprofit serving the lymphedema community with overlapping provider education, awareness materials, and clinical guidance — directly comparable audience and mission structure.
• Lipedema Project: An education-and-awareness-focused nonprofit specifically dedicated to Lipedema; overlaps with the Lipedema Foundation's awareness and resource-distribution mission and serves the same patient and clinician audience.
• Hereditary Disease Foundation: A rare-disease research foundation that has sustained grantmaking, consortium-building, and researcher networks for decades — closely comparable in mission, scale, and niche-disease operating model.

Broad incumbents

• Susan G. Komen Foundation: A large disease-specific foundation combining research grantmaking, patient education, and awareness distribution at scale; represents the mature version of the awareness-plus-research model Lipedema Foundation operates.
• American Diabetes Association: A large chronic-disease research and advocacy nonprofit funding investigator-initiated studies, professional education, and patient resources at scale; structurally similar to a scaled Lipedema Foundation were Lipedema to reach similar public recognition.
• Multiple Myeloma Research Foundation: A disease-focused research foundation that combines grantmaking, patient data assets, and clinical collaboration to accelerate therapies in a single disease — directly comparable operating model at higher scale.
• Cystic Fibrosis Foundation: A large disease-specific research grantmaking foundation that pioneered the venture philanthropy model of funding translational research toward approved therapies; analogous operating model for the Lipedema Foundation's long-term ambition.

Emerging players

• Vascular Cures: A patient-centered research nonprofit focused on vascular disease, sharing the foundation's model of combining research grantmaking with provider education and patient resources in an adjacent vascular-adjacent space.

Market position

Strengths5 records

Weaknesses5 records

Competitive moat5 records

Key risks5 records

Key highlights7 records

Customer concentration

• Xx.com/LipedemaFndn
• YouTubeyoutube.com/channel/UC4zBZEEwLw2nGkqIp7txy8Q
• Facebookfacebook.com/Lipedema
• LinkedInlinkedin.com/company/lipedema-foundation
• Instagraminstagram.com/lipedema_fndn

Revenue estimate

Valuation estimate

Number of profiles

Profiles1 record

Funding overview

Funding rounds

Investors

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M&A

Investments

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Frequently asked questions about Lipedema Foundation