National Organization for Rare Disorders, Inc.

Pulmonary Hypertension, Primary

Important
It is possible that the main title of the report Pulmonary Hypertension, Primary 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

• PPH
• Primary Obliterative Pulmonary Vascular Disease
• Primary Pulmonary Hypertension
• Familial Primary Pulmonary Hypertension
• Pulmonary Arterial Hypertension

Disorder Subdivisions

• None

General Discussion

Primary pulmonary hypertension is a rare, progressive disorder characterized by high blood pressure (hypertension) of the main artery of the lungs (pulmonary artery). The pulmonary artery is the blood vessel that carries blood from the heart through the lungs. Symptoms of primary pulmonary hypertension include shortness of breath (dyspnea) especially during exercise, chest pain, and fainting episodes. The exact cause of primary pulmonary hypertension is unknown.
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Resources

Pulmonary Hypertension Association
801 Roeder Road.
Suite 400
Silver Spring, MD 20910
Tel: (301)565-3004
Fax: (301)565-3994
Tel: (800)748-7274
Email: adrienne@phassociation.org
Internet: http://www.phassociation.org

American Heart Association
7272 Greenville Avenue
Dallas, TX 75231-4596
Tel: (214)373-6300
Fax: (214)373-0268
Tel: (800)242-8721
Email: Review.personal.info@heart.org
Internet: http://www.americanheart.org

American Lung Association
61 Broadway, 6th Floor
New York, NY 10006
USA
Tel: (212)315-8700
Fax: (212)315-8870
Tel: (800)586-4872
Internet: http://www.lungusa.org

Newman, John H., M.D.
Vanderbilt University
B1308 Medical Center North
Nashville, TN 37232
Tel: (615)386-6891

NIH/National Heart, Lung and Blood Institute Information Center
P.O. Box 30105
Bethesda, MD 20824-0105
Tel: (301)592-8573
Fax: (301)251-1223
Email: nhlbiinfo@rover.nhlbi.nih.gov

PHCentral
1309 12th Ave.
San Francisco, CA 94122-2213
Tel: (415)564-0707
Fax: (415)564-0707
Email: cswitzer@phcentral.org
Internet: http://www.phcentral.org

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
Email: ordr@od.nih.gov
Internet: http://rarediseases.info.nih.gov/Default.aspx

International Scleroderma Network
7455 France Ave So #266
Edina, MN 55435-4702
Tel: (952)583-5735
Tel: (800)564-7099
Email: isn@sclero.org
Internet: http://www.sclero.org

UCSF Pulmonary Hypertension Clinic
400 Parnassus Ave.
5th Floor
San Francisco, CA 94143
Tel: (415)353-2873
Fax: (415)353-2127
Internet: http://www.ucsfhealth.org/adult/medical_services/heart_care/hypertension/index.html

For a Complete Report

This is an abstract of a report from the National Organization for Rare Disorders, Inc. ® (NORD). A copy of the complete report can be obtained for a small fee by visiting the NORD website. The complete report contains additional information including symptoms, causes, affected population, related disorders, standard and investigational treatments (if available), and references from medical literature. For a full-text version of this topic, see http://www.rarediseases.org/search/rdblist.html

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:  3/24/2008
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