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The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.


Lipodystrophy United


Address

22 Frances Road,
Los Lunas, NM 87031 USA

Phone

209-845-7213

Description

Lipodystrophy United is an organization founded to support individuals with Lipodystrophy. Their mission is to provide a community and facilitate support and education for anyone affected by this rare disease. They also serve as a resource to increase awareness in the general population as well as the medical and insurance communities. Lipodystrophy United assists healthcare professionals in understanding lipodystrophy trends, physical attributes, and clinical symptoms in order to aid the advancement of knowledge, treatment, and future research. Currently, they are establishing a web network and focusing on patient outreach. Their future plans include increasing physician outreach and hosting a national conference. Lipodystrophy is a rare metabolic disorder characterized by the selective loss of adipose tissue in various places of the body, especially the tissue under the skin. The resulting loss in the hormone leptin causes imbalances in energy use of the metabolism. It also causes adipose tissue to collect around internal organs. Symptoms include insulin resistance, diabetes, and high cholesterol from adipose accumulation around vital organs. Physical appearance can be altered with displaced areas of adipose tissue. This disease can be both inherited or acquired and affect people of all ages. Subtypes include congenital generalized lipodystrophy, (Berardinelli-Seip Syndrome), acquired generalized lipodystrophy (Lawrence-Seip Syndrome), familial partial lipodystrophy (includes Dunnigans FPLD and Kobberlings FPLD) and acquired partial Lipodystrophy (Barraquer-Simons Syndrome). https://idconnect.patientcrossroads.org/; Twitter Handle: _@andra_LU; Facebook Name: Lipodystrophy United

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