by Lynn Ehrne | May 7, 2024 | Advocacy, RESEARCH, Therapies
National Patient Experience Week April 29, 2024- May 3rd, 2024. We are proud to partner with ReCode Therapeutics on a video project, shedding light on the patient experience through the patient lens. PART 1: Shedding light on PCD- IntroductionPatient Experience Week...
by Michele Manion | Feb 14, 2024 | Advocacy, EDUCATION
Why do challenging lung infections occur in PCD?Primary Ciliary Dyskinesia (PCD) is a rare genetic disorder that affects the cilia, which are tiny, hair-like structures that line the respiratory tract and other parts of the body. These cilia play a crucial role in...
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...
