Perhaps add the Fat Disorders Resource Society to your sources. I worked with Dr Karen Herbst in 2006-2010 to form the non profit and was it's founding President. This non profit has annual national conferences open to the public with many specialist speakers and workshops focusing on Dercum's Disease, Lipedema, Madelungs Disease, and Familial Multiple Lipomatosis. There is a conference coming up next month in Atlanta. Dr Herbst is now viewing DD as a loose connective tissue disease. (And yes, I have DD too.)