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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 MyD-H, the Dartmouth-Hitchcock patient portal. You must be a registered MyD-H user for the Lebanon, Manchester, or Nashua locations to access this site.

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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