The PCD Foundation was founded by a parent, Michele Manion, and a patient, Lynn Ehrne, in 2001, and is governed by a board of directors. The organization was incorporated in 2002 in the State of Minnesota and received federal tax‐ exempt designation in 2004. We rely on fundraising, grants and corporate money donations to fund operations. 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.
The primary purpose for starting the PCDF was to address severe unmet needs in the PCD patient community, including: diagnostic challenges, lack of evidence to support therapies, inadequate demographic information and paucity of data related to the natural history of this disorder. Our programs reflect our efforts to create an infrastructure and processes to address these unmet needs.
In 2002 the PCDF partnered with the University of North Carolina, Chapel Hill (under the leadership of Dr.’s Michael Knowles and Margaret Leigh) on a five‐year grant to establish a clinical research network for PCD and related disorders. This network, the Genetic Disorders of Mucociliary Clearance Consortium (GDMCC), has now been funded for 15 years and the multi‐center model created by the GDMCC formed the basis for the growth of the PCDF Clinical and Research Network Centers (PCDF-CRNC) program.
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.
The PCD Foundation envisions a world free from illness and early death due to primary ciliary dyskinesia (PCD).