The National Organization for Rare Disorders (NORD)

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Index of Rare Diseases

This is the list of diseases currently covered in the Rare Disease Database.

Rare Disease Database

Search this database for reports on more than 1,200 diseases.

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Index of Organizations

This is the list of organizations in NORD’s Organizational Database.

Organizational Database

Read about more than 2,000 patient organizations and other sources of help.

NORD's
Washington Office

NORD's Washington OfficeRead about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.

 

**IMPORTANT** 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.

About Madelung's

Address:
7251 Brentwood Blvd
Apt 163
Brentwood, CA 94513
USA

Phone: 925-516-6744
Email Address: madelungs@yahoo.com

About Madelung's was established in 2003 as a connecting point for anyone dealing with this extremely rare condition. It was once thought there were only 600 cases in the conditions over 2500 year history, but we know that those numbers can't have been right, there are about 50 known US cases today, and many more cases of related conditions such as HIV lipodystrophy, Dercum's disease, and multiple familial lipomatosis. The mission of About Madelung's is the same as it has always been, a point of contact and a source of recent information for anyone dealing with this baffling and complicated condition. About Madelung's has already accomplished three goals 1) Debunking the almost mythical stereotypes about this condition, 2) Identifying more cases in patients who were previously undiagnosed or incorrectly diagnosed, and 3) Making sure that no one has to deal with this condition alone.

Website: http://www.geocities.com/madelungs/madelungshome.html


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Last modified Tuesday, September 07, 2010