Welcome to our website which provides an up-to-date information service about the condition, how it is diagnosed and how to live with it on a daily basis. Please look at the video case studies with real life people affected by PCD telling their stories.
Primary Ciliary Dyskinesia (PCD) is an inherited, relatively rare condition associated with the abnormality of cilia (microscopic hairs that beat in the airways, sweeping secretions out of the respiratory tract). PCD may affect the lungs, nose, sinuses, ears and fertility.
The condition involves recurrent infections in the nose, ears, sinuses and lungs. If left untreated can lead to a form of lung damage known as a ‘bronchiectasis’.
Up to 50% of patients with PCD also have dextrocardia (heart on the right side) and situs inversus (internal organs on opposite side to normal).
The mainstay of treatment for people with PCD is regular chest physiotherapy to clear secretions from the lungs and targeted antibiotics to treat infections. PCD can affect people in a variety of different ways, but when managed well, most with the condition lead relatively normal lives.
We hope you find this website useful and please do contact us if you have any comments or suggestions.
Rare Disease Day 2020
With only 5 weeks to go, Rare Disease Day 2020 is right around the corner! Celebrated on Saturday 29th February this year, Rare Disease Day aims to raise awareness amongst the general public about rare diseases and their impact on patients’ lives. If you would like to take part in this year’s events, check out the
Call for participants: parents of children with PCD under 6 years of age
We are asking parents of children with PCD (younger than 6 years of age) to help us develop a Quality of Life Questionnaire. In the future we plan to do some studies to investigate different treatments in PCD. To see whether the treatments work, a Quality of Life Questionnaire will allow us to assess whether
Survey for Rare Disease – Deadline 29th Nov
Follow this link to find out more and take the survey – the deadline for responses is Friday 29 November. In July, the Minister for rare disease at the Department for Health and Social Care, Baroness Blackwood, announced a ‘national conversation’ on rare disease. This conversation aims to gather a range of views from the rare