by Michele Manion | Mar 13, 2023 | Advocacy, RESEARCH
February 2022 There are several opportunities coming up in the very near future, in the US, Canada, and Europe (and possibly other countries) for mRNA therapies for PCD. We are planning a town hall this month to discuss what is on the horizon, what the community...
by Lynn Ehrne | Mar 10, 2022 | Diagnosis, EDUCATION, RESEARCH
The PCD Foundation hosted a live webinar entitled:Clearing the Way: an update on PCD research,presented by Michele Manion, PCD Foundation Executive Director.PCD research is moving full-speed ahead! Learn more about what we have learned so far, what still needs to...
by Lynn Ehrne | Mar 2, 2022 | Diagnosis, EDUCATION, RESEARCH
PCD Foundation hosted a live webinar entitled:How common are PCD genetic variants in the general population?,presented by William Hannah, MD and Benjamin Gaston, MD. The presentation will focus on the paper, ‘The global prevalence and ethnic heterogeneity of...
by Billy Anton | Nov 22, 2021 | EDUCATION, RESEARCH
PCDF Research Forum Efficacy and Safety of Azithromycin Maintenance Therapy in Primary Ciliary Dyskinesia (BESTCILIA): A Multicenter, Double-blind, Randomized, Placebo-controlled Phase 3 Trial Kobbernagel et al Summary by Andrew Sadowski Article Link Quick Summary The...
by Lynn Ehrne | Jun 29, 2020 | COVID19, RESEARCH
Asunto: Participe en una encuesta de investigación para pacientes con enfermedades raras y sus familias sobre los impactos de la COVID-19 Hola. Le escribo para informarle sobre un estudio de investigación que está siendo realizado por la Red de Investigación Clínica...
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...
