Our Research Report

Created with the Milken Institute, the Lipedema Giving Smarter Guide is a research report that outlines lipedema epidemiology, health burden, diagnosis, and treatment, and identifies key research opportunities. The guide can help you make informed decisions for directing philanthropic investments and research efforts.


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In conjunction with the Milken Institute, the Lipedema Foundation has published the disease landscape report, Lipedema Giving Smarter Guide. Read the report!

Milken Institute's Center for Strategic Philanthropy

Lipedema Research Project

In 2016, the Lipedema Foundation partnered with the Milken Institute's Center for Strategic Philanthropy to perform a landscape analysis of the lipedema research field. The research report was based on input from all key stakeholder including clinicians, researchers, patients, and NIH partners (see below). The year-long effort principally led by Erik Lontok culminated in an in-person meeting held in late 2016, and publishing of the Lipedema Giving Smarter Guide in early 2017.

A key outcome of the project is the Foundation's Research Roadmap, described as research challenges and philanthropic opportunities on page 30 of the Lipedema Giving Smarter Guide. We encourage you to take a moment and see how the Foundation intends to build the lipedema research field - and to let us know if you wish to be a part of the effort.

Attendees of the 2016 Lipedema Research Retreat

First row, left to right, Ad Hendrickx (Nij Smellinghe Hospital), Harry Voesten (Nij Smellinghe Hospital), LaTese Briggs (Milken Institute), Felicitie Daftuar (Lipedema Foundation), Karen Herbst (University of Arizona), Natasha Harvey (University of South Australia), and Walter Cromer (Texas A&M Health Science Center).

Second row, Rachelle Crescenzi (Vanderbilt University), Eva Sevick-Muraca (University of Texas Health Science Center, Houston), Carol Haft (NIDDK), Eser Tolunay (NHLBI), Melissa Stevens (Milken Institute), Hamish Scott (University of South Australia), Echoe Bouta (Massachusetts General Hospital), Amira Klip (The Hospital for Sick Children), Carrie Shawber (Columbia University), Kristiana Gordon (St. George’s, University of London), Bruce Bunnell (Tulane University), and Kathy Russell (Consultant).

Last row, Sara Al-Ghadban (University of Arizona), Neil Piller (Flinders Medical Centre), Yann Klimentidis (University of Arizona), Erik Lontok (Milken Institute), Tim Padera (Massachusetts General Hospital), Jens Titze (Vanderbilt University), Peter Wang (Washington University), Joseph Rutkowski (Texas A&M College of Medicine), Glen Brice (St. George’s, University of London), Pia Ostergaard (St. George’s, University of London), Melody Swartz (University of Chicago), Annalisa Zecchin (KU Leuven), and Maura Donlan (Milken Institute).

Attendees not pictured, Tobias Bertsch (Foeldi Clinic), Deborah Clegg (Cedars-Sinai Diabetes and Obesity Research Institute), Danielle Wildstein (Lipedema Foundation), Shannon Seeberg (Lipedema Foundation), and Philipp Scherer (The University of Texas Southwestern Medical Center).