Access to high-quality diagnostic and treatment for all individuals with primary ciliary dyskinesia (PCD) is a primary goal of the PCD Foundation. As we continue to learn more about PCD and develop better standards for identifying affected individuals and treating the consequences of inherited ciliary dysfunction, the time is right to create a network of centers with PCD expertise.

The excitement is building for our 10th annual PCD Family Education Day in Durham, North Carolina.
As we continue to refine the program, we wanted to get the tentative schedule out--hoping to entice
any of you who may still be considering registering for this event!  As you can see, the schedule of
educational talks is quite full, but we build in lots of time for questions and discussion.  We have an
excellent group of patients and families registered and it promises to be our best Family Day ever!

2012 marks an important milestone for the PCD Foundation. Our first family education event was held in 2002. PCD has come a long way since then and we want to celebrate with our PCD community!

As in past years, this event will feature educational sessions and talks from top experts in PCD research and management, as well as lots of opportunities to get to know other families and affected individuals. Additionally, we are planning special events to commemorate and celebrate the PCD Foundation and those who have been instrumental in making it successful (including all of you!).

The PCD Foundation hosted a meeting for top pulmonologists in North America to share an exciting initiative to create a network of PCD Clinical Centers. This initiative is part of the our 'Path to Clinical Trials' program, which is a way to accelerate our understanding of PCD, develop standards for diagnosis and treatment and ensure access to better therapies through clinical trials.

Get geared up! October is PCD Awareness Month

Consider the following:

• Approximately 25,000 children and adults have PCD in the United States, but only 400 know it.
• Most people have never heard of PCD because it's 'rare'; however, cystic fibrosis (CF) is also 'rare' and most anyone knows exactly what it is!
• Most doctors have only vague recollections of PCD/Kartageners from medical school and are not up to date on the realities of the disease.
• The few treatments we have for PCD have not been tested for PCD patients.