FDRS Resources
Below you will find several links to various resources concerning fat disorders. Some of these resources may be more ‘medically detailed’ content-wise than others. If you wish to find other links pertaining to your health and daily life, please see our “Helpful Links” section.
Dr. Karen L. Herbst MD
Karen Herbst, PhD, MD, San Diego, is one of this country’s leading researchers and experts on Dercum’s Disease (Adiposis Dolorosa). Her website has overviews on Dercum’s Disease, Madelung’s Disease, Lipedema, and Familial Multiple Lipomatosis. Her site also contains suggested treatments, and detailed recommendations. While her website is perhaps more geared toward medical personnel, patients are able to print out recommendations for their personal physicians.
National Organization for Rare Disorders
National Organization for Rare Disorders is dedicated to helping people with rare, orphan diseases. NORD is a wonderful resource. This website is very extensive. There is a database of rare diseases and pages of programs and services to check out. Dercum’s Disease, Madelung’s Disease.
National Institute for Health (NIH) 
The National Human Genome Research Institute site for Dercum’s Disease provides a good condensed description of DD/AD with other website links as well.
This is a non-profit organization dedicated to providing education and guidance to lymphedema patients, health care professionals and the general public by providing information on the prevention and management of primary and secondary lymphedema.
A thorough website primarily devoted to Lymphedema. Here one can find information, resources and a support group not only for those with lymphedema but also for the family, friends, and therapists who care for them. (There are several references to Lipedema throughout the website, but Lymphedema is the site’s focus.)
A super detailed website for people with Lymphedema created by people with Lymphdedema
Click for this website’s section on Lipedema
This Foundation is a not-for profit organization that strives to advance research of the lymphatic system and to find the cause of and cure for lymphatic diseases, lymphedema, and related disorders.
American Chronic Pain Association
Offering support and information for people with chronic pain.
For Grace is a nonprofit organization passionately devoted to ensuring the ethical and equal treatment of all women in pain.
