Latest News

On November 16th, FDRS attended the NLN's 5th Annual Rare Voice Awards in Washington D.C. where Legislative Asst Nico Janssen was recognized for his work on the Lymphedema Treatment Act and our very own Sarah Bramblette was recognized for being a Patient Advocate!

FDRS attended the Faster Cures Partnering for Cures conference in NYC this week where attendees spent time exchanging transformative research and process ideas with key opinion leaders.

Registration for the Lipedema and Dercum's: Goals for the Future and Tools for Today conference in Salt Lake City April 28-30 is NOW OPEN.

Have you seen our new Photo Essay on Lipedema and Dercum's Disease?  Visit

FDRS has a new page... Check our our Blogs on Tho Do's and Dont's of Exercising with a Fat Disorder,  Self-Care for Pain and Inflammation, and more!

LE&RN awarded our Research Coordinator and past President Felicitie Daftuar with their 2016 Research Advocate Award.

FDRS is currently in Dallas, TX attending the 2016 NLN Conference meeting with researchers, doctor's and patients.

For information on this year's conference and on the NLN, click here.

New research center known as TREAT (Treatment, Research and Education of Adipose Tissue) will be opened at UA Tucson and led by Internationally renowned endocrinologist Dr. Karen Herbst.  The center will focus on the study of potential genetic, metabolic and hormonal causes behind the accumulation of atypical fat tissue.   TREAT, Funded by the Lipedema Foundation, will help Dr. Herbst expand her efforts to better understand, diagnose and treat adipose tissue disorders (ATDs).

We cannot be more excited to finally have a place where actual studies will be focused on lipedema, Dercum's Disease, FML and Madelung's!   This is an incredible step forward in finding a cause, treatment and someday possibly even a cure for lipedema. 

We will keep you posted as this new project rolls out and its progress! 

To learn more about TREAT click here:  TREAT PROGRAM

We have been invited to teach researchers about lipedema and we couldn't be more excited! 

The NLN Patient summit will take place in San Francisco September 8-9, 2015!   Sign up now at: NLN Patient Summit

FDRS is pleased to announce it is sponsoring up to three Fellowships for Lipedema and Dercum’s Disease.   Each grant is worth up to $98,000. 

Click here for more info:


Welcome to the new FDRS website. Please use Contact Us to send feedback!

FDRS is excited to announce that we have been accepted to the NORD (National Organization for Rare Diseases) Member Organization!  We look forward to working with NORD to represent the needs of our community of people with rare diseases for years to come.

The Fat Disorders Research Society, Inc has been admitted to NORD as a Member Organization. We look forward to collaborating with them!

The Fat Disorders Research Society, Inc. is pleased to announce its recent donations to Dr. Karen L. Herbst’s research into Dercum’s Disease and Lipedema at the University of Arizona.


If you would like to support researchers like Karen L. Herbst, M.D. and others who are working toward a better understanding of fat disorders, please consider making a donation today at

Want the latest? Check out our Newsletter from the home page

Click Here for the Video 

Videos of the Sept 2014 conference can now be found on YouTube at the link


Friday Sept 5th and Saturday Sept 6th in Washington, D.C.



Day One    Friday, September 5:    4:30 – 9:00

Hosted by Flexi Touch

Light Meal Provided


4:30 – 5:00Registration

5:00 – 5:30 Meet and Greet 

5:30 – 5:50Introductions:  FDRS President, Board and Special Guests

5:50 – 6:20FlexiTouch, Premiere Sponsor Presentation

6:20 – 6:40Linda Anne Kahn, CLT:  Healthy living and Nutrition    

6:40 – 7:35Mixer (with Vendors present at their booths)

7:35 – 8:55Fashion Show

8:55 – 9:00Review of Day 2 Schedule/Questions


Day TwoSaturday, September 6:  7:30 – 5:45

Light Lunch Provided


7:30 – 8:00Registration

8:00 – 8:10 Introductions

8:10 – 8:20Jeanneane Palczewski, Patient/Bob Cornute, Trainer: Morning Music/Stretch

8:20 – 8:40Yvonne Russell, RN, CLT:  A Day in the Life of a Lipedema Patient

8:40 – 9:40Dr. Stutz:  Liposuction in Lipedema Patients

9:40 – 10:00Questions and Handouts 


10:00 – 10:15Break/Vendor Visits


10:15 – 10:45Patricia and Bob Cornute, Patient and Fitness Trainer:  Making Exercise Work for You 

10:45 – 11:40Yvonne Russell, RN, CLT:  Compression and Product Overview

11:40 – 12:40Steve Norton, Norton School of Lymphatic Therapy:  Managing Lipedema Safely


12:40 – 1:40Lunch/Vendor Visits


1:40 – 2:40Karen Herbst, MD, PhD: The Four Fat Disorders; Focus on Lipedema and Dercum’s Disease

2:40 – 2:55Dr. David Amron, M.D.:  Liposuction on Lipedema Patients

2:55 – 3:15Laura Sunstein-Murphy, PhD, Esquire: Insurance and Appeals

3:15 – 3:20Questions and Handouts


3:20 – 3:35Break/Vendor Visits


3:35 – 3:45 Jeanneane Palczewski, Patient/Bob Cornute, Trainer: Afternoon Music/Stretch

3:45 – 5:00Panel Discussion:  Q & A 

5:00 – 5:30Karen Herbst, MD, PhD:  Outlook for the Future/Patient Survey/Wrap Up/Evaluation

5:30 – 5:45 Recognitions and Thank You 



6:00 – 6:45Pool Time!  Everyone is welcome!  Let’s Splash and Have Some Fun after sitting all day! 



7:00pm Professionals' Dinner - By invitation only



Washington Hilton

1919 Connecticut Ave., NW,

Washington, District of Columbia, 20009 USA

1-202-483-3000 or 1-800-HILTONS

Room block code “LIP” – Rooms booked under this rate are $119.00 



FLOORPLAN Click here to view Washington Hilton Stacked Floorplan



Friday night - taco salad bar and water provided (it will be HOT)

Saturday lunch - Choice of chicken Cobb salad or Greek salad with chicken, oil and vinegar and other dressings on the side. A few fish options and a few veg options are available for those that don't eat chicken or salad. Tea, iced tea, water, coffee.

The hotel has a large coffee shop and a bar on the main floor



There is a charge for parking at the hotel. Normally garage parking is $36 /day and valet is $46/day.

Offsite parking:

LAZ Parking 2001 S Street NW (20th Street NW & Connecticut Avenue NW). 202-667-3030. The charge will be $16.

PMI Universal South Garage 2001 Florida Avenue NW 202-785-9191. The charge is $9.


Registration fee of $150  can be paid for in one of the following ways:

1.      PayPal – Send your registration fee via PayPal – our PayPal address is: This email address is being protected from spambots. You need JavaScript enabled to view it.

2.      To pay by credit card or check, contact our Treasurer Nancy Lazarus for details; her email address is This email address is being protected from spambots. You need JavaScript enabled to view it.  .