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PCD Foundation joins Chan Zuckerberg Initiative’s Rare As One Network

PCD Foundation joins Chan Zuckerberg Initiative’s Rare As One Network

by Lynn Ehrne | Nov 4, 2021 | Advocacy, Diagnosis

Dear PCD Foundation Friends and Family,We are thrilled to announce the PCD Foundation is one of 40 patient-led, rare disease organizations receiving a grant through the Chan Zuckerberg Initiative (CZI)’s Rare As One (RAO) Project. RAO is aimed at supporting and...

PCD Diagnosis in 2019: Where We Are Now & Where We Are Going

by Michele Manion | Nov 26, 2019 | Diagnosis, EDUCATION, Genetics

The first thing to know is that there is currently no test for PCD that picks up 100% of cases or that can totally rule PCD out. The second thing to be aware of is that diagnostic practices for PCD vary by country and sometimes even by region within a country. A...

PCDF Research Forum #7: Rapid Advances in PCD Research

by Billy Anton | Mar 21, 2019 | Diagnosis, EDUCATION, Genetic Testing, Genetics, RESEARCH, Uncategorized

With all the research being done with PCD, it is important for pulmonologists to be aware of the latest findings so as not to use outdated methods for diagnosing and treating PCD.  “Rapid Advances in Primary Ciliary Dyskinesia Research: A Brief Update for...

PCDF Research Forum #6: Genotype/Phenotype Relationships in PCD

by Billy Anton | Feb 25, 2019 | Diagnosis, EDUCATION, Genetics, RESEARCH

Primary Ciliary Dyskinesia: Longitudinal Study of Lung Disease by Ultrastructure Defect and Genotype Stephanie D. Davis et al. Link to study abstract Understanding and identifying the relationship between genotype (gene mutation) and phenotype (observable clinical...

Hot off the Press! The ATS Clinical Practice Guideline for the Diagnosis of PCD is now (freely) available at the American Thoracic Society website!

by Lynn Ehrne | Jun 28, 2018 | Diagnosis

Using rigorous evidence-based analysis, this document provides an overview of available information related to best practices for diagnosing PCD and addresses some of the challenges and misinformation currently confronting clinicians and patients in their PCD...

‘I Have all the Symptoms–It Must Be PCD’

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...
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