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Alveolar Capillary Dysplasia

National Organization for Rare Disorders, Inc.

Important
It is possible that the main title of the report Alveolar Capillary Dysplasia is not the name you expected. Please check the synonyms listing to find the alternate name(s) and disorder subdivision(s) covered by this report.

Synonyms

  • ACD

Disorder Subdivisions

  • None

General Discussion

Alveolar capillary dysplasia (ACD) is a rare, likely congenital, disorder of the lungs (pulmonary system) and especially of the blood system serving the lungs. It is a disorder of the newborn. The normal diffusion process of oxygen from the air sacs to the blood in the lungs and, thence, to the heart, fails to develop properly. The disorder is sometimes called misalignment of the pulmonary veins. Rather than misaligned, the pulmonary vein is malpositioned in a site somewhat different from its normal position.

Infants with the disorder present with the signs of lack of oxygen (hypoxemia) and severely increased pulmonary hypertension.

Since treatment is seldom, if ever, effective, life expectancy of the infant is very, very, short.

Resources

American Lung Association
1301 Pennsylvania Ave NW
Suite 800
Washington, DC 20004
USA
Tel: (202)785-3355
Fax: (202)452-1805
Tel: (800)586-4872
Email: info@lungusa.org
Internet: http://www.lungusa.org

Alveolar Capillary Dysplasia Association
c/o Steve and Donna Hanson
5902 Marcie Court
Garland, TX 75044-4958
Email: sdesj@verizon.net
Internet: http://www.acd-association.com

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
TDD: (888)205-3223
Internet: http://rarediseases.info.nih.gov/GARD/

Madisons Foundation
PO Box 241956
Los Angeles, CA 90024
Tel: (310)264-0826
Fax: (310)264-4766
Email: getinfo@madisonsfoundation.org
Internet: http://www.madisonsfoundation.org

Infants Remembered In Silence, Inc. (IRIS)
112 Third Street NE
Faribault, MN 55021
Tel: (507)334-4748
Fax: (507)334-4748
Email: support@irisremembers.com
Internet: http://www.irisRemembers.com

Fetal Hope Foundation
9786 South Holland Street
Littleton, CO 80127
USA
Tel: (303)932-0553
Tel: (877)789-4673
Email: info@fetalhope.org
Internet: http://www.fetalhope.org

Share Pregnancy & Infant Loss Support, Inc.
402 Jackson Street
Saint Charles, MO 63301
Tel: (636)947-6164
Fax: (636)947-7486
Tel: (800)821-6819
Email: info@nationalshare.org
Internet: http://www.nationalshare.org

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders (NORD). A copy of the complete report can be downloaded free from the NORD website for registered users. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational therapies (if available), and references from medical literature. For a full-text version of this topic, 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. NORD recommends that affected individuals seek the advice or counsel of their own personal physicians.

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.

For additional information and assistance about rare disorders, please contact the National Organization for Rare Disorders at P.O. Box 1968, Danbury, CT 06813-1968; phone (203) 744-0100; web site www.rarediseases.org or email orphan@rarediseases.org

Last Updated:  10/23/2003
Copyright  2003 National Organization for Rare Disorders, Inc.

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