by Lynn Ehrne | Jun 17, 2020 | COVID19, EDUCATION
This exciting international survey will track COVID-19 infections in individuals with PCD. This is a particularly important effort, as it is the only survey focused specifically on PCD. Please join with PCD families from around the world to help with this critical...
by Lynn Ehrne | Jun 17, 2020 | COVID19, EDUCATION
Researchers from the Rare Diseases Clinical Research Network (RDCRN) are looking for input from patients to better understand how COVID-19 is impacting the rare diseases community. As a partner patient advocacy group of the RDCRN for the past 15 years (through the...
by Lynn Ehrne | Jun 13, 2020 | COVID19, EDUCATION
Continued thanks and appreciation to Dr. Shailendra Das (Texas Children’s Hosp), and Dr. Anne Griffiths (Children’s Minnesota), for joining us for the 10th PCD virtual Covid19 town hall meeting. Special ‘thank you’ to two PCD patients that are also...
by Lynn Ehrne | May 22, 2020 | COVID19, EDUCATION
Many thanks to Dr. Sankaran Krishnan (Maria Fareri Children’s Hospital), Dr. Shailendra Das (Texas Children’s Hosp), and Dr. Anne Griffiths (Children’s Minnesota), for joining us for the 9th PCD virtual Covid19 town hall meeting. We are planning to do more of...
by Lynn Ehrne | May 15, 2020 | COVID19, EDUCATION
Many thanks to Dr. Shailendra Das (Texas Children’s Hosp), Dr. Anne Griffiths (Children’s Minnesota) and Dr. Adam Shapiro (Montreal Children’s Hosp), for joining us for the 8th PCD virtual Covid19 town hall meeting. We are planning to do more of these as our...
