People affected by primary ciliary dyskinesia (PCD) were invited to share their experiences in an online survey. The reason for the survey was to collect information to help to improve existing services and increase the resources used for diagnosing this rare disease.
365 people from 25 countries responded to the survey, the results have been published in the European Respiratory Journal.
If you are interested in getting involved with research about PCD you may be able to join our newest project, BEAT-PCD.
BEAT-PCD is a clinical research collaboration (CRC) for Better Experimental Approaches to Treat – PCD) and is a network of people with an interest in PCD. The aim of this CRC is to advance research into PCD to improve diagnosis and patient care.
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ELF is a non-profit organisation registered as a UK company (VAT no. GB 115 0027 74) and charity (no. 1118930).
Our Brussels office enterprise number is 0738.383.695
European Lung Foundation's TR ID number in the Transparency Register is: 094039644810-79
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