Where can people with PCD get the best care?
PCD is a rare disorder and like any rare disorder, the best care comes from the few centers familiar with the disease. We currently have seven expert centers in the US and two in Canada, which can be found here: Rare Disease Clinical Research Network Participating Clincal Centers If it is not possible to get to one of the PCD expert sites, the next best thing is to be seen at a cystic fibrosis clinic where doctors are familiar with mucociliary clearance disorders, bronchiectasis and most importantly, the need to treat preventatively and not as symptoms arise. This mindset is very different and not all pulmonologists are trained to think in these terms. CF doctors usually are and a CF clinic is your best bet after the expert centers. The CF Foundation has an interactive list of certified CF centers on their website: Cystic Fibrosis Care Centers If none of these options work for you please contact the PCD Foundation and we will try to help you find someone in your area.
