Read the summaries of our latest publications!

Leonie Schreck (left) received the 1st prize for the Best Oral presentation on Paediatric Pneumology research for her talk on “Infertility and pregnancy outcomes among adults with primary ciliary dyskinesia” at the 2024 joint annual meeting of the Swiss Societies of Pneumology and Thoracic Surgery in Baden, Switzerland. She presented results from the Living with PCD study. Continue reading

Myrofora Goutaki received the prize for the Best Clinical Research Poster presentation at the 2024 primary ciliary dyskinesia (PCD) On The Move Conference organised by the PCD Foundation for the Living with PCD study. Continue reading

The third Living with PCD (formerly COVID-PCD) newsletter is out! Available here.

We have renamed the COVID-PCD study with your help to Living with PCD. Further information will follow shortly.


Read the summaries of our COVID-PCD publications!


We sent out a new special questionnaire to the COVID-PCD participants regarding how symptoms change over time.


Read the summaries of our COVID-PCD publications!


The second COVID-PCD newsletter is out! Available here.


We sent out a new special questionnaire to the COVID-PCD participants focusing on fertility and fertility counselling.

If you are not yet a study participant but interested in the topic fertility:

  1. Click on the “Participate in the study” button
  2. We will send you a baseline questionnaire to know more about your PCD symptoms and your PCD diagnosis
  3. As soon as you complete the baseline questionnaire, you will receive the fertility questionnaire


Start of research assistant Lara Pissini to support the team of the COVID-PCD study.


The COVID-PCD research team is on a research visit from 13.6.-25.6.22 to meet with the PCD research teams in Dundee (Scotland) and Southampton (England). Check out on Twitter what we learn and experience:


We presented the COVID-PCD study in a PCD Live Session by PCD Support UK. Watch the recording here.


Did you miss the German-speaking COVID-PCD meeting? The recording is available here.


Already 9 new participants in 2022. Read all about the latest results here.


German-speaking COVID-PCD meeting on Wednesday, 12th January 2022 at 6pm (CET).

We will present results from the study, discuss future plans, and get feedback from listeners. The event is open to all people with PCD and you are very welcome to join this online session!

The meeting will be held in German.

Contact us if you would like to participate, then we will send you the Zoom link to join:


New publications on COVID-19 vaccinations and facemask usage with data from the COVID-PCD study. Lay summaries will follow soon!


Start of new PhD student Leonie Schreck to support the team of the COVID-PCD study.


Read our newsletter describing results from the study and plans for the future (available in 6 languages):


The first results of the COVID-PCD study are published! SARS-CoV-2 infections in people with PCD are neither frequent, nor particularly severe.


A special questionnaire focused on the COVID-19 vaccine was sent to all study participants today (29.05.2021). This questionnaire will help to understand if people with PCD get priority access to the COVID-19 vaccine, if there are any regional differences, and whether some people with PCD are worried about getting vaccinated.

We encourage all study participants to complete this short questionnaire.


The study protocol of the COVID-PCD study is published. You can find all publications here.


For the rare disease day on February 28, 2021, the Italian PCD association together with Hatha yoga teacher, Elena Boriani, prepared a FREE yoga lesson with breathing- and relaxation exercises. The video begins with a short description of PCD.



Start of the COVID-PCD study