Adiposis dolorosa
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Adiposis dolorosa, or Dercum disease, is a rare condition that is characterized by multiple, painful fatty lipomas (benign, fatty tumors) that occur most often in middle aged, post-menopausal, obese women. Although it is 20 times more common in women, 16 percent of the reported cases are males and it can also occur in people who are not obese. The lipomas can cause severe pain, which is often debilitating. This condition is chronic and tends to be progressive. The exact cause of adiposis dolorosa is unknown.[1]
References
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Learning about Dercum Disease. National Human Genome Research Institute. July 2010 Available at: http://www.genome.gov/17516629. Accessed May 13, 2011.
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Adiposis dolorosa
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More Detailed Information (Found 9 resources)
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General
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Genetics Home Reference (GHR) contains information on Adiposis dolorosa. Click on the link to go to GHR and review the information.
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MedlinePlus, a Web site designed by the National Library of Medicine to help you research your health questions, provides more information about this topic. Click on the link to view this information.
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Medscape Reference provides information on this topic. Click on the link to view this information. You may need to register to view the medical textbook, but registration is free.
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MeSH® (Medical Subject Headings) is a terminology tool used by the National Library of Medicine. Click on the link to view information on this topic.
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The National Human Genome Research Institute's (NHGRI) mission encompasses a broad range of studies aimed at understanding the structure and function of the human genome and its role in health and disease. Click on the link to view the information page on this topic.
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The National Organization for Rare Disorders (NORD) is a federation of more than 130 nonprofit voluntary health organizations serving people with rare disorders. Click on the link to view information on this topic.
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The Online Mendelian Inheritance in Man (OMIM) database contains genetics resources that discuss Adiposis dolorosa. Click on the link to go to OMIM and review these resources.
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Orphanet is a database dedicated to information on rare diseases and orphan drugs. Access to this database is free of charge. Click on the link to read information on this topic.
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PubMed is a searchable database of medical literature and lists journal articles that discuss Adiposis dolorosa. Click on the link to view a sample search on this topic.
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Organizations Providing General Support | Social Networking Websites
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Organizations (Found 9 resources)
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Fat Disorders Research Society
2305 Robincrest Ln Glenview, IL 60025 E-mail: http://www.fatdisorders.org/contact-fdrs/ Web site: http://www.fatdisorders.org
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The Mayday Pain Project
c/o SPG 136 West 21st Street, 6th Floor New York, NY 10011 Telephone: 212-366-6970 Fax: 212-366-6979 E-mail: mail@painandhealth.org Web site: http://www.painandhealth.org
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American Chronic Pain Association (ACPA)
P.O. Box 850 Rocklin, CA 95677-0850 Toll-free: 800-533-3231 Telephone: 916-632-0922 Fax: 916-632-3208 E-mail: ACPA@pacbell.net Web site: http://www.theacpa.org
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Organizations Providing General Support
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Genetic Alliance
4301 Connecticut Avenue NW Suite 404 Washington, DC 20008-2369 Telephone: 202-966-5557 Fax: 202-966-8553 E-mail: info@geneticalliance.org Web site: http://www.geneticalliance.org
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National Organization for Rare Disorders (NORD)
55 Kenosia Avenue PO Box 1968 Danbury, CT 06813-1968 Toll-free: 1-800-999-6673 (voicemail only) Telephone: 203-744-0100 TTY: 203-797-9590 Fax: 203-798-2291 E-mail: orphan@rarediseases.org Web site: http://www.rarediseases.org/
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Social Networking Websites
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The Dercum's Disease Support Group is a community of patients, family members and friends dedicated to dealing with Dercum's Disease, together. Click on the link above to learn more about this online community.
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DNAandU.org is a Web site and blog that collects firsthand stories from people facing issues, making tough decisions, and using genomic (DNA) information in their own healthcare. Click on the link to learn from their experiences and/or submit your own story.
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Madisons Foundation
P.O. Box 241956 Los Angeles, CA 90024 Telephone: 310-264-0826 Fax: 310-264-4766 E-mail: getinfo@madisonsfoundation.org Web site: http://www.madisonsfoundation.org/
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RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders.
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Services (Found 2 resources)
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Many individuals want to know about healthcare professionals or researchers who have knowledge of their conditions. When a condition is rare, it can be difficult to find someone who has seen many cases. Although there is no list of experts in rare diseases, GARD's How to Find an Expert fact sheet provides several ways to identify healthcare professionals who have experience with a particular condition. Click on the link to access this resource and learn more.
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Parent Resources
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The Parent Technical Assistance Center Network provides a list of the Parent Training and Information Centers in each state. These centers are funded by the United States Department of Education to provide early intervention and special education information and training to parents of children with disabilities from birth to age 26. Click on the link to find the Parent Center in your state.
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Scientific Conferences (Found 2 resources)
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Past Conferences
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RDCRN 3rd Conference on Clinical Research for Rare Diseases, October 2, 2012
Location: Hilton Washington DC/Rockville Hotel & Executive Meeting Center, Rockville, MD Description: Clinical research in rare diseases presents a number of challenges and unique issues that are not usually considered in the training of clinical investigators through existing training programs. Goals of the conference include: direct instruction of trainees and new investigators in rare disease research methodology; development of a reusable curriculum/syllabus on rare disease research methodology; and stimulation of ideas regarding the unique issues facing investigators engaged in the study of rare diseases.
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VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010): Global Approach to Accessibility in Rare Diseases, Orphan Drugs and Neglected Diseases , March 18, 2010 - March 20, 2010
Location: Palais Rouge Convention Center, Palermo, Buenos Aires Description: For the first time, the VI International Conference on Rare Diseases and Orphan Drugs (ICORD 2010) was convened in the southern hemisphere in agreement with its aim of globalization of rare diseases research and orphan products development activities.
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Clinical Trials & Research (Found 3 resources)
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The Centers for Mendelian Genomics program is working to discover the causes of rare genetic disorders. For more information about applying to the research study, please visit their website.
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NIH Clinical Trials and You is a website developed by the National Institutes of Health (NIH) to help people learn more about clinical trials, why they matter, and how to participate.
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Patient Registry
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ResearchMatch is a free national research registry designed to bring together patients, healthy volunteers and researchers. Anyone from the United States can register with ResearchMatch, and a parent, legal guardian, or caretaker may register on behalf of a volunteer. Researchers from participating institutions use the ResearchMatch database to search for patients or healthy volunteers who meet the study criteria. Many studies are looking for healthy people of all ages, while some are looking for people with specific illnesses. ResearchMatch was developed by major academic institutions across the country and is funded by the National Center for Advancing Translational Sciences.
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