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 2, 2022 | Advocacy, EDUCATION, FAMILY
PCD Foundation is hosted a live webinar entitled ‘Mental Health Issues in Children and Adolescents with PCD’ presented by Tamara Vance, MSW LICSW. The presentation provided information on common mental health issues related to PCD among patients as well...
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...
by Lynn Ehrne | Nov 25, 2020 | Advocacy, COVID19, EDUCATION
Thank you to everyone that attended the virtual town hall. We received several questions in advance. Many were regarding COVID-19. Continued thanks and appreciation to Dr. Shailendra Das (Texas Children’s Hosp), Dr. Hugo Escobar (Children’s Mercy),Dr. Anne...
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...
