20th Anniversary

20 Years of Progress, Together

In 2022 we celebrated the 20th anniversary of the PCD Foundation (PCDF)! The year was filled with great joy and immense gratitude as we celebrated two decades of work to expand programs and support initiatives focused on finding a cure for PCD. We are grateful for all of you who have helped us along the way.

We celebrated this incredible milestone on Friday, November 11, 2022 at the Chicago History Museum in Chicago, Illinois. Thank you to all of you who supported the 20th Anniversary Celebration! It was so special to gather together in person to celebrate the advancements made in rare disease medicine and science and to honor the investment and impact of the PCD community.

We are proud to share that with your support, the event raised more than $435,000! This support will allow the PCD Foundation to continue to be a leader in driving PCD care and research forward. Thank you!


Event photos can be viewed here.

Please enjoy videos from the event:



Did You Know?

Over the last two decades we have made significant advances in discovery and care, and we are so proud of how far we’ve come. Read on for some of our shared accomplishments! 

  • PCD Awareness Month started as a one-day national walk for the PCD Foundation in the early 2000’s and has now grown into an international awareness month – a dedicated time for PCD families, advocates and supporters to raise awareness and funds for PCD.
  • In 2002 there were two primary ciliary dyskinesia genes identified. Twenty years later there are more than 50! Knowing genes and PCD causing mutations can help with diagnosis and potentially help direct future treatments such as mRNA based therapies. 
  • The PCDF – CRCN was started by the PCD Foundation in 2012 to provide patients with access to specialized PCD diagnosis and care. After establishing procedures, training and a vetting process, the first site accreditation took place in 2015 with Rainbow Babies and UH Cleveland Medical Center. Today, there are more than 40 centers (including GDMCC research sites) across North America and growing!