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Diseases

Genetic and Rare Diseases Information Center (GARD)

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Primary ciliary dyskinesia


Other Names for this Disease
  • Ciliary dyskinesia primary
  • ICS
  • Immotile cilia syndrome
  • Polynesian bronchiectasis
  • Polynesian bronchiectasis
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Your Question

Can you please provide me with some doctors that specialize in primary ciliary dyskinesia or that have knowledge treating this disorder?

Our Answer

We have identified the following information that we hope you find helpful. If you still have questions, please contact us.

How might I find a doctor that has knowledge of treating 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/
Last updated: 5/10/2011