Diagnosing primary ciliary dyskinesia: an international patient perspective

por Behan, Laura, Dunn Galvin, Audrey, Rubbo, Bruna, Masefield, Sarah, Copeland, Fiona, Manion, Michele, Rindlisbacher, Bernhard, Redfern, Beatrice, Lucas, Jane S.
Publicado 2016

SARS-CoV-2 infections in people with primary ciliary dyskinesia: neither frequent, nor particularly severe

por Pedersen, Eva S.L., Goutaki, Myrofora, Harris, Amanda L., Dixon, Lucy, Manion, Michele, Rindlisbacher, Bernhard, patient advisory group, COVID-PCD, Lucas, Jane S., Kuehni, Claudia E.
Publicado 2021

COVID-PCD: a participatory research study on the impact of COVID-19 in people with primary ciliary dyskinesia

por Pedersen, Eva S.L., Collaud, Eugénie N.R., Mozun, Rebeca, Ardura-Garcia, Cristina, Lam, Yin Ting, Harris, Amanda, Lucas, Jane S., Copeland, Fiona, Manion, Michele, Rindlisbacher, Bernhard, Silberschmidt, Hansruedi, Goutaki, Myrofora, Kuehni, Claudia E.
Publicado 2021

Access to medicines for rare diseases: beating the drum for primary ciliary dyskinesia

por Crowley, Suzanne, Azevedo, Inês, Boon, Mieke, Bush, Andrew, Eber, Ernst, Haarman, Eric, Karadag, Bulent, Kötz, Karsten, Leigh, Margaret, Moreno-Galdó, Antonio, Mussaffi, Huda, Nielsen, Kim G., Omran, Heymut, Papon, Jean-François, Pohunek, Petr, Priftis, Kostas, Rindlisbacher, Bernhard, Santamaria, Francesca, Valiulis, Arunas, Witt, Michal, Yiallouros, Panayiotis, Zivkovic, Zorica, Kuehni, Claudia E., Lucas, Jane S.
Publicado 2020

International BEAT-PCD consensus statement for infection prevention and control for primary ciliary dyskinesia in collaboration with ERN-LUNG PCD Core Network and patient represent...

por Marthin, June K., Lucas, Jane S., Boon, Mieke, Casaulta, Carmen, Crowley, Suzanne, Destouches, Damien M.S., Eber, Ernst, Escribano, Amparo, Haarman, Eric, Hogg, Claire, Maitre, Bernard, Marsh, Gemma, Martinu, Vendula, Moreno-Galdó, Antonio, Mussaffi, Huda, Omran, Heymut, Pohunek, Petr, Rindlisbacher, Bernhard, Robinson, Phil, Snijders, Deborah, Walker, Woolf T., Yiallouros, Panayiotis, Johansen, Helle Krogh, Nielsen, Kim G.
Publicado 2021