Disease Information from NORD, National Organization for Rare Disorders, Inc.

The National Organization for Rare Disorders (NORD)

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**IMPORTANT** The information contained in the Organizational Database (ODB) is provided for informational purposes only. There is no implied endorsement by NORD. NORD does not promote or endorse participation in any specific organization. The information is subject to change without notice. Every effort is made to ensure that the details for each entry are as current as possible.

Alpha-1 Research Registry

Address:
c/o Medical University of South Carolina
96 Jonathan Lucas St., Suite 812-CSB, MSC 630
Charleston, SC 29425-6300
USA

Phone: 843-792-0260
Fax: 843-792-0297
800 Number: 877-886-2383
Email Address: alphaone@musc.edu

The Alpha-1 Research Registry is a confidential database of individuals diagnosed with, or identified as carriers of, alpha-1 antitrypsin deficiency. Low levels of a protein called alpha-1-antitrypsin which is found in the blood and protects the lungs so that they can work normally characterize this hereditary disorder. When the level of this protein is deficient, the lungs may be damaged, and breathing may be affected. The registry was established in 1997 by the Alpha-1 Foundation to facilitate research toward improved treatment and, ultimately, a cure for this disorder. It is located at the Medical University of South Carolina in Charleston.

Website: http://www.alphaoneregistry.org

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Last modified Tuesday, September 07, 2010