by Lynn Ehrne | Apr 8, 2020 | Advocacy, COVID19, EDUCATION
Big thanks to Dr. Anne Griffiths (Children’s Minnesota) and Dr. Shailendra Das (Texas Children’s Hosp), for joining us for the 3rd PCD virtual Covid19 town hall meeting. We are planning to do more of these as our healthcare provider’s...
by Lynn Ehrne | Apr 5, 2020 | Advocacy, COVID19
Recording from Spanish Speaking Town HallMuchísimas gracias a Dr. Ricardo Mosquera (University of Texas- Houston) y Dr. Wilfredo De Jesús Rojas (University of Puerto Rico- Medical Sciences Campus) por unirse a nosotros para nuestra primera reunión de ayuntamiento para...
by Lynn Ehrne | Mar 30, 2020 | Advocacy, COVID19, EDUCATION
Big thanks to Dr. Adam Shapiro (Montreal Children’s Hosp), Dr. Pamela McShane ( University of Texas Health Science Center at Tyler), Dr. Amjad Horani (St. Louis Children’s Hosp) and Dr. Anne Griffiths (Children’s Minnesota) for joining us for our...
by Lynn Ehrne | Mar 17, 2020 | Advocacy, COVID19
PRIMARY CILIARY DYSKINESIA and CORONAVIRUS DISEASE 2019 (COVID-19) Since the first cases were reported in Hubei Province in China, coronavirus disease 2019 (COVID-19) has spread worldwide. The causative virus, SARS-CoV-2, is a new betacoronavirus, like MERS-CoV and...
by Michele Manion | Oct 24, 2019 | Advocacy
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...
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...
