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
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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
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Covid-19 is very unsettling for all of our PCD community – we will be regularly updating this page with latest information and ideas on how to keep yourselves entertained whilst self-isolating.