NORD's
Washington Office
Read about events on Capitol Hill, funding for rare-disease research, and other topics of interest from NORD's office in Washington, DC.
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a medical condition, always seek the advice of your physician or other qualified health
professional. NORD's reports provide a brief overview of rare diseases. For more specific
information, we encourage you to contact your personal physician or the agencies listed as
"Resources" on this report.
Copyright 1988, 1989, 1996, 1999, 2007, 2008
NORD is very grateful to Maimoona Zariwala, PhD, FACMG, Research Assistant Professor,
Department of Pathology and Laboratory Medicine, University of North Carolina at Chapel Hill, for assistance in the preparation of this report.
Synonyms of Primary Ciliary Dyskinesia
- immotile cilia syndrome
- PCD
Disorder Subdivisions
General Discussion Primary ciliary dyskinesia (PCD) is an autosomal recessive genetic condition in which the microscopic cells in the respiratory system called cilia do not function normally. Ciliary dysfunction prevents the clearance of mucous from the lungs, paranasal sinuses and ears. Bacteria and other irritants in the mucous lead to frequent respiratory infections. Kartagener syndrome is a type of PCD associated with a mirror-image orientation of the internal organs (situs inversus).
Organizations related to Primary Ciliary Dyskinesia
- American Lung Association
61 Broadway, 6th Floor
New York NY 10006
Phone #: 212-315-8700
800 #: 800-586-4872
e-mail: N/A
Home page: http://www.lungusa.org
- American Lung Association of Connecticut
45 Ash Street
E. Hartford CT 06108
Phone #: 860-289-5401
800 #: 800-586-4872
e-mail: bcase@alact.org
Home page: http://www.alact.org
- British Paediatric Orphan Lung Disease (BPOLD)
None
None None None
Phone #: N/A
800 #: N/A
e-mail: N/A
Home page: http://www.bpold.co.uk
- Genetic and Rare Diseases (GARD) Information Center
PO Box 8126
Gaithersburg MD 20898-8126
Phone #: 301-251-4925
800 #: 888-205-2311
e-mail: ordr@od.nih.gov
Home page: http://rarediseases.info.nih.gov/Default.aspx
- MUMS (Mothers United for Moral Support, Inc) National Parent-to-Parent Network
150 Custer Court
Green Bay WI 54301-1243
Phone #: 920-336-5333
800 #: 877-336-5333
e-mail: mums@netnet.net
Home page: http://www.netnet.net/mums/
- Madisons Foundation
PO Box 241956
Los Angeles CA 90024
Phone #: 310-264-0826
800 #: N/A
e-mail: getinfo@madisonsfoundation.org
Home page: http://www.madisonsfoundation.org
- PCD Foundation
10137 Portland Avenue South
Minneapolis MN 55420
Phone #: 612-386-1261
800 #: N/A
e-mail: info@pcdfoundation.org
Home page: http://www.pcdfoundation.org
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