The Primary Ciliary Dyskinesia Foundation
The Primary Ciliary Dyskinesia Foundation (PCDF) is a not-for-profit 501(c)(3), patient advocacy organization for individuals with inherited ciliary disorders and their caregivers. PCDF is patient-focused, driven with a mission to provide the leadership and resources needed to support increased research, accelerated diagnosis, improved health and, ultimately, a cure for primary ciliary dyskinesia.
The PCDF 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
Founded in 2002, by Michele Manion, PCDF is the only organization focused on this group of disorders in the United States. The PCDF relies on fundraising, grants and corporate money donations to fund operations. The PCDF site contains more information about how to donate, volunteer, and advocate for the PCDF community.