PCD Foundation (Primary Ciliary Dyskinesia)

61 Lake Meadow Dr
Rochester, NY, USA


2024 Member

About PCD Foundation (Primary Ciliary Dyskinesia)

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 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.