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 (CRNC) program.
To improve the quality of life of those affected by PCD and to develop the means to find a cure.
As a patient-focused organization, our goal 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:
The PCD Foundation envisions a world free from illness and early death due to primary ciliary dyskinesia (PCD), and in order to carry out that vision, we strive to do the following by 1) improving diagnosis, quality of life and prognosis through research, 2) educating & support patient, scientific, and medical communities and 3) raising awareness of PCD.
The primary goal of the PCD Foundation is to accelerate access to medical research for those affected by primary ciliary dyskinesia. We believe that only through the knowledge and insight gained from such research can we successfully achieve our mission and provide appropriate support, education and service to our community.
In addition, the PCD Foundation seeks through educational initiatives, advocacy and the creation of regional and national patient services communities to improve understanding and awareness of primary ciliary dyskinesia both externally (the medical community, the general public, governmental agencies) and internally (our patient community).