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 | Jul 22, 2020 | COVID19, EDUCATION
Continued thanks and gratitude to Dr. Shailendra Das (Texas Children’s Hosp) for joining us for the 14th PCD virtual Covid-19 town hall meeting. Please gather your questions for the next call. You can send them in advance to info@pcdfoundation.org. The next call is...
by Lynn Ehrne | Jul 11, 2020 | COVID19, EDUCATION
Continued thanks and gratitude to Dr. Shailendra Das (Texas Children’s Hosp) and Dr. Anne Griffiths (Children’s Minnesota) for joining us for the 13th PCD virtual Covid19 town hall meeting. Please gather your questions for the next call. You can send them in...
by Lynn Ehrne | Jun 29, 2020 | COVID19, RESEARCH
Asunto: Participe en una encuesta de investigación para pacientes con enfermedades raras y sus familias sobre los impactos de la COVID-19 Hola. Le escribo para informarle sobre un estudio de investigación que está siendo realizado por la Red de Investigación Clínica...
