Lipodystrophy United is an organization of committed individuals living strong with Lipodystrophy.  Our mission is to provide an interactive community, facilitating support and education for anyone affected by this rare disease.  We serve as a resource and to increase awareness in the general population as well as the medical and insurance communities.  We advocate and act as a catalyst for new patient diagnosis by assisting healthcare professionals in the understanding of Lipodystrophy trends, physical attributes and clinical symptoms in order to aid in the advancement of knowledge, treatment and future research.

Our Mission

We are incredibly pleased to announce Lipodystrophy Connect (LD Connect), a global patient registry for all Lipodystrophy patients.  We want to invite you to be a part of this vital research.  The mission of Lipodystrophy United (LU) is to bring patients and families together to support one another, and promote research to improve lipodystrophy diagnosis and treatment. One of the most important steps towards finding effective treatments for lipodystrophy is to uncover ways in which the different types of lipodystrophy behave; the symptoms that are commonly seen and how those symptoms progress; if any disabilities result; trends among and between subtypes; and what complications arise.  To accomplish these goals requires the collection of as much information as possible about a large group of lipodystrophy patients into a single database.  The more patients who join the registry, the greater the chances that research will produce results that benefit everyone with lipodystrophy. LD Connect will serve as that database–the critical link between the patient community and the scientific/medical communities.  Important things to know about participating in Lipodystrophy Connect: 
  • the patient registry is supported by LU
  • there is no cost for you to join
  • registering on LD Connect is voluntary
  • your name and identity are kept confidential
     We do encourage everyone with Lipodystrophy to register at LD Connect, but you will always be welcome in our patient community whether or not you join LD Connect.  You do not have to agree to take part in any clinical research in order to join the registry. You may opt to be contacted about opportunities to participate in clinical research, but the choice to contact the researcher and enter a trial is completely up to you.  LD Connect values and respects the privacy of our patients and their families. The information you report will be de-identified; your name and identity will not be released. 
     We need to hear YOUR VOICE and we hope you will decide to join LD Connect.  Every individual who registers makes a vital contribution to help all those affected by lipodystrophy.  For more detailed information about LD Connect and to register, please go to the registry website http://ldconnect.org or click the button below.
​      Should you have any questions, please send us an email: andra@lipodystrophyunited.org
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Download the Lipodystrophy Connect Brochure in English  or  Spanish

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Lipodystrophy United © 2013 

Disclaimer: 
​Lipodystrophy United does not promote nor endorse any treatment, physician or lifestyle.  The intent of any information posted on this website is to promote awareness and information.