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 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...
