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About the Foundation
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The Primary Ciliary Dyskinesia Foundation (‘PCDF’) is a not-for-profit 501(c)(3) patient advocacy foundation for individuals with inherited ciliary disorders and their caregivers.

Our Mission: As a patient-focused organization, our mission is to provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health and, ultimately, a cure for primary ciliary dyskinesia. Overall, our goals are to:

  • Improve diagnosis, quality of life and prognosis through research
  • Educate & support patient, scientific and medical communities
  • Raise awareness about the realities of the disease

We believe that our goals are within reach, but we cannot get there without your support.

Currently, the PCDF is the only organization focused on this group of disorders in the United States. We have a national focus with a growing network of US regional and global chapters.

The PCDF was founded in 2002 by Michele Manion who continues to direct activities and is governed by a board of directors. We rely on fundraising, grants and corporate money donations to fund operations.