National Organisation for Rare Diseases

The section is for the disussion of Dercum's Disease (Adiposis Dolorosa), a disease in the lipoma family. It is characterized by painful, irregular fatty swellings or lipomas and is frequently misdiagnosed.

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matt
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National Organisation for Rare Diseases

Post by matt » Wed Sep 28, 2011 5:19 pm

Among other rare diseases, an American non-profit NORD lists Dercum's Disease. They consider any disease that affects fewer than 200 000 Americans a rare disease. According to their website there are 7000 such diseases. Couldn't find Familial Multiple Lipomatosis there though?

Dercum's Disease

Synonyms of Dercum's Disease

Adiposis Dolorosa
Fatty Tissue Rheumatism
Juxta-Articular Adiposis Dolorosa
Lipomatosis Dolorosa Morbus Dercum's

Dercum's disease is an extremely rare disorder characterized by multiple, painful growths consisting of fatty tissue (lipomas). These growths mainly occur on the trunk, the upper arms and upper legs and are found just below the skin (subcutaneously). Pain associated with Dercum's disease can often be severe. Pain may be caused by these growths pressing on nearby nerves. Dercum's disease mainly occurs in adults and more women are affected than men. In some cases, affected individuals may also experience weight gain, depression, lethargy, and/or confusion. The exact cause of Dercum's disease is unknown.

Organizations related to Dercum's Disease

American Chronic Pain Association
P.O. Box 850
Rocklin, CA 95677 USA
Phone #: 916-632-0922
800 #: 800-533-3231
e-mail: ACPA@pacbell.net
Home page: http://www.theacpa.org
Dercum's Support
PO Box 350
Somis, CA 93066
Phone #: 805-386-3125
800 #: --
e-mail: dercumdata@aol.com
Home page: http://www.dercum.org
Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg, MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: http://rarediseases.info.nih.gov/GARD/EmailForm.aspx
Home page: http://rarediseases.info.nih.gov/GARD
NIH/National Institute of Diabetes, Digestive & Kidney Diseases
Office of Communications & Public Liaison
Bldg 31, Rm 9A06
31 Center Drive, MSC 2560
Bethesda, MD 20892-2560
Phone #: 301-496-3583
800 #: --
e-mail: NDDIC@info.niddk.nih.gov
Home page: http://www2.niddk.nih.gov
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Klaus
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Re: National Organisation for Rare Diseases

Post by Klaus » Sun Oct 02, 2011 4:11 am

Here is another Society:

The Dercum Society
Att. Heather Lawver
email: hawner@gmail.com
I have very good contacts to them and it is good - if somebody has really Dercum disease- to contact Heather,

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sjohn
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Re: National Organisation for Rare Diseases

Post by sjohn » Sun Oct 02, 2011 4:19 pm

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