Our Work

The Primary Ciliary Dyskinesia Foundation (PCDF) is a nonprofit 501(c)(3) patient advocacy organization serving individuals with inherited ciliary disorders and their caregivers. 

Founded in 2001 by a parent, Michele Manion, and a patient, Lynn Ehrne, PCDF was created to address significant unmet needs in the PCD community, including diagnostic difficulties, a lack of evidence-based treatments, limited demographic data, and a poor understanding of the disease’s progression. Our programs are designed to build the infrastructure needed to close these gaps and improve care.

PCDF is governed by a volunteer Board of Directors. The foundation was incorporated in Minnesota in 2002 and received federal tax-exempt status in 2004. Our work is supported through individual donations, grants, and corporate contributions.

In 2002, PCDF partnered with the University of North Carolina at Chapel Hill—led by Drs. Michael Knowles and Margaret Leigh—on a five-year grant to establish a clinical research network focused on PCD and related disorders. That collaboration led to the creation of the Genetic Disorders of Mucociliary Clearance Consortium (GDMCC), which has now been continuously funded for over 15 years. The GDMCC’s multi-center model laid the foundation for the development of PCDF’s own Clinical and Research Network Centers (PCDF-CRNC), which continue to drive progress in diagnosis, research, and care.

Mission

The mission of the PCD Foundation is to improve the quality of life for those affected by PCD and to develop the means to find a cure.

Vision

The PCD Foundation envisions a world free from illness and early death due to primary ciliary dyskinesia (PCD).