by Michele Manion | Oct 9, 2019 | RESEARCH
We are delighted to announce that the Genetic Disorders of Mucociliary Clearance Consortium (GDMCC) has been re-funded for another five years (years 15-20) of research on PCD and related disorders. Here is the official announcement from the National Center for...
by Michele Manion | Oct 23, 2017 | Diagnosis, Genetic Testing, Genetics
PCD diagnosis continues to be challenging. All current testing options available to aid in PCD diagnosis (biopsy with TEM, nasal nitric oxide measurement, high-speed videomicroscopy, immunofluorescent assay of ciliary proteins) have limitations and do not work in all...
by Michele Manion | Sep 22, 2017 | Advocacy
The proposed Graham-Cassidy bill is bad for individuals with rare disorders. Our colleagues at the United Mitochondrial Disease Foundation (UMDF) engage an independent legislative advisory group, Holland & Knight, to assess the impact of proposed legislation on...
by Michele Manion | Aug 28, 2017 | EDUCATION, Meetings, RESEARCH
Summary PCD on the Move 2017 (OTM 2017), the fourth annual North American scientific meeting dedicated to primary ciliary dyskinesia (PCD), focused on how to move ciliary/PCD science into practical applications to improve the quality of life for individuals with PCD....
by Michele Manion | May 17, 2017 | Uncategorized
Excellent new paper by Dr. Adam Shapiro, et al on the value of nasal nitric oxide (nNO) measurement for the diagnosis of PCD published in the Annals of the American Thoracic Society (ATS) last week. The summary abstract is available by clicking on the link above. Long...
