Primary ciliary dyskinesia

The National Institutes of Health (NIH) established the Rare Diseases Clinical Research Network (RDCRN) to facilitate collaboration among experts in many different types of rare diseases.  The goal of the network is to contribute to the research and treatment of rare diseases by working together to identify biomarkers for disease risk, disease severity and activity, and clinical outcome, while also encouraging development of new approaches to diagnosis, prevention, and treatment.  The RDCRN consists of 19 consortia and a Data and Technology Coordinating Center (DTCC). One of these consortia is the Genetic Disorders of Mucociliary Clearance Consortium:
http://rarediseasesnetwork.epi.usf.edu/gdmcc/learnmore/index.htm#pcd

On this Web site, you can also find Participating Clinical Centers, which treat people with primary ciliary dyskinesia. Click on the link to view a list of these centers.

If it is not possible to get to one of these expert clinics, you can also try finding a cystic fibrosis clinic where doctors are usually familiar with mucociliary clearance disorders. The Cystic Fibrosis Foundation maintains a list of certified cystic fibrosis centers on their Web site:
http://www.cff.org/LivingWithCF/CareCenterNetwork/CFFoundation-accreditedCareCenters/

The Primary Ciliary Dyskinesia Foundation can also help you to find a doctor in your area who is familiar with this condition. You can e-mail them at: info@pcdfoundation.org/