National Organization for Rare Disorders, Inc.
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
MUMS National Parent-to-Parent Network
150 Custer Court
Green Bay, WI 54301-1243
USA
Tel: (920)336-5333
Fax: (920)339-0995
Tel: (877)336-5333
Email: mums@netnet.net
Internet: http://www.netnet.net/mums/
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)
101 Third Street NW
Faribault, MN 55021
Tel: (507)334-4748
Fax: (507)334-4748
Email: support@irisremembers.com
Internet: http://www.irisRemembers.com
Fetal Hope Foundation
9786 S 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.