X-linked adrenoleukodystrophy
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X-linked adrenoleukodystrophy is an inherited disorder that occurs most often in males. It mainly affects the nervous system and the adrenal glands (small glands located on top of each kidney). People with this disorder often have progressive destruction of the fatty covering (myelin) that insulates nerves in the brain and spinal cord. They may also have a shortage of certain hormones caused by damage to the outer layer of the adrenal glands (adrenal cortex), called adrenocortical insufficiency. X-linked adrenoleukodystrophy is caused by mutations in the ABCD1 gene. There are three distinct types of X-linked adrenoleukodystrophy: a childhood cerebral form, an adrenomyeloneuropathy type, and a type called Addison disease.[1] A specific treatment for X-linked adrenoleukodystrophy is not currently available, but eating a diet low in very-long-chain fatty acids and taking special oils can lower the blood levels of very-long-chain fatty acids. Bone marrow transplant is being tested as an experimental treatment.[2]
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- More Detailed Information (Found: 9 Resources)
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Genetics Home Reference (GHR) contains a condition summary on X-linked adrenoleukodystrophy. Click on the link to go to GHR and review this summary.
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MedlinePlus, a Web site designed by the National Library of Medicine Web site 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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The National Institute of Neurological Disorders and Stroke (NINDS) collects and disseminates research information related to neurological disorders. Click on the link to view information 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 X-linked adrenoleukodystrophy. 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 X-linked adrenoleukodystrophy. Click on the link to view a sample search on this topic.
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GeneReviews provides current, expert-authored, peer-reviewed, full-text articles describing the application of genetic testing to the diagnosis, management, and genetic counseling of patients with specific inherited conditions. Click on the link to view the article on this topic.
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The National Organization of Rare Disorders (NORD) has partnered with Inspire.com to launch an online community for people with rare diseases called The NORD Rare Disease Community. This community connects medical patients, family members, caregivers, and professionals. Click on The NORD Rare Disease Community to learn more.
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RareShare is an online social hub dedicated to patients, families and healthcare professionals affected by rare medical disorders. Click on RareShare to learn more.
- Clinical Trials & Research (Found: 1 Resource)
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ClinicalTrials.gov lists trials that are studying or have studied X-linked adrenoleukodystrophy. Click on the link to go to ClinicalTrials.gov to read descriptions of these studies.
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GeneTests lists laboratories offering clinical genetic testing for this condition. Clinical genetic tests are ordered to help diagnose a person or family and to aid in decisions regarding medical care or reproductive issues. Talk to your health care provider or a genetic professional to learn more about your testing options.
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The Sixth Annual North American Genetic Analysis of ABC Transporters Workshop, September 24, 2009 - September 25, 2009
Location: NCI-Frederick, Frederick, MD
Description: The objectives of the meeting are to bring together researchers in the field of ABC transporters to discuss advances in the field and new research findings. Presentations will include talks by students and postdoctoral scientists on their current research, overview presentations by leading researchers in the field, and poster presentations. In addition, presentations will be given by representatives of rare disease foundations to provide interaction between scientists in the field and the disease foundations. The goals are to bring the top research groups in the field together with representatives from major disease foundations to discuss new data and educate new investigators in the field. New research ideas and funding ideas, productive collaborations, and job opportunities for young investigators will be generated.
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