All Posts by Michele Manion

Vertex Announces FDA-Approval of New Triple Drug Compound Effective for the Most Common Mutation in Cystic Fibrosis

Vertex Announces FDA-Approval of New Triple Drug Compound Effective for the Most Common Mutation in Cystic Fibrosis Yesterday, the CF Foundation and Vertex announced that the FDA had approved a triple-drug compound that is designed to be effective for the most common—and most severe—mutation in cystic fibrosis (CF). The new

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Next 5 Year Round of PCD Research Re-funded

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 Advancing Translational Sciences (NCATS). Link to article: https://ncats.nih.gov/news/releases/2019/rdcrn-funding WHAT’S NEW

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PCD Foundation Call to Action on Graham-Cassidy

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 the UMDF community. UMDF has generously shared Holland & Knight’s overview of Graham-Cassidy

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