National Organization for Rare Disorders, Inc.
It is possible that the main title of the report Lymphangioleiomyomatosis is not the name you expected.
Lymphangioleiomyomatosis (LAM) is a rare progressive multisystem disorder that predominantly affects women of childbearing age. It occurs in women who have tuberous sclerosis, and also in women who do not have a heritable genetic disorder. LAM is characterized by the spread and uncontrolled growth (proliferation) of specialized cells (smooth muscle-like LAM cells) in certain organs of the body, especially the lungs, kidney and lymphatics. Common symptoms associated with LAM include coughing and/or difficulty breathing (dyspnea), especially following periods of exercise or exertion. Affected individuals may also experience complications including collapse of a lung or fluid accumulation around the lungs (pleural effusion). The disorder is progressive and, in some cases, may result in chronic respiratory failure.
American Lung Association
- 55 W. Wacker Drive
- Suite 1150
- Chicago, IL 60601
- Tel: 1-800-548-8252
- Email: firstname.lastname@example.org
- Website: http://www.lungusa.org
British Lung Foundation
- 73-75 Goswell Road
- London, EC1V 7ER
- United Kingdom
- Tel: 0207 688 5555
- Tel: 3000030555
- Email: email@example.com
- Website: http://www.lunguk.org
Genetic and Rare Diseases (GARD) Information Center
- PO Box 8126
- Gaithersburg, MD 20898-8126
- Tel: (301)251-4925
- Fax: (301)251-4911
- Tel: (888)205-2311
- Website: http://rarediseases.info.nih.gov/GARD/
LAM Health Project
- 1909 Capitol Avenue,
- Suite 203
- Sacramento, CA 95811
- Tel: (617)460-7339
- Fax: (617)864-0614
- Email: info@LAMHealthProject.org
- Website: http://www.lamhealthproject.org/
Lymphatic Malformation Institute
- 7475 Wisconsin Ave
- Suite 600
- Bethesda, MD 20814
- Email: firstname.lastname@example.org
- Website: http://www.lmiresearch.org
NIH/National Heart, Lung and Blood Institute
- P.O. Box 30105
- Bethesda, MD 20892-0105
- Tel: (301)592-8573
- Fax: (301)251-1223
- Email: email@example.com
- Website: http://www.nhlbi.nih.gov/
Second Wind Lung Transplant Association, Inc.
- P.O. Box 1657
- Wimberley, TX 78676-1657
- Tel: (512)847-9303
- Tel: (888)855-9463
- Email: firstname.lastname@example.org
- Website: http://www.2ndwind.org
The LAM Foundation
- 4520 Cooper Road
- Suite 300
- Cincinnati, OH 45242
- Tel: (513)777-6889
- Fax: (513)777-4109
- Tel: (877)287-3526
- Email: email@example.com
- Website: http://www.thelamfoundation.org/
For a Complete Report
This is an abstract of a report from the National Organization for Rare Disorders (NORD). For a full-text version of this report, go to www.rarediseases.org and click on Rare Disease Database under "Rare Disease Information".
The information provided in this report is not intended for diagnostic purposes. It is provided for informational purposes only.
It is possible that the title of this topic is not the name you selected. Please check the Synonyms listing to find the alternate name(s) and Disorder Subdivision(s) covered by this report.
This disease entry is based upon medical information available through the date at the end of the topic. Since NORD's resources are limited, it is not possible to keep every entry in the Rare Disease Database completely current and accurate. Please check with the agencies listed in the Resources section for the most current information about this disorder.
Last Updated: 7/21/2015
Copyright 2009 National Organization for Rare Disorders, Inc.
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