At our virtual AGM this year, our new chair, Lucy Dixon, spoke about wanting to keep growing our PCD community so that more people with the condition can feel connected even despite the additional barriers that Covid-19 has posed. We were therefore thrilled when Dan Hawkins approached us about an idea called PCD-Connect, which is
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PCD Day Q&A Session Transcript We are delighted to share the Q&A session held with our PCD specialists on 27th June at our AGM is now available for download here. This includes an update on facemasks and is accurate from 10/07/2020. As always, this advice is likely to change and evolve as the situation in
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PCD Poster Competition 2020 This year we held a competition to design an educational poster for people with PCD on one of these themes: 1) Washing your hands 2) The importance of physiotherapy and exercise 3) PCD and Me The committee were extremely impressed with the quality and amount of poster entries that we received
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PCD AGM and Q&A – 27th June 2020 (online) Full video of our AGM is now available on YouTube: Strange times and saying goodbyes The 27th June 2020 was an unforgettable moment for the PCD Family Support Group for two reasons: Firstly, we bid farewell to our sensational chair of 17 years, Fiona Copeland.
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Update Statement from the National leads of the children and adult PCD centres in England – 22nd June 2020 Advice on what to do at the end of the initial ‘shielding’ period at the end of June CONTEXT: We continue to review the available data on COVID-19 and we remain fortunate that in children
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We have rearranged our AGM as a virtual meeting. Please join us on Saturday, 27th June at 10.30 to hear all our news. We will have a panel of PCD experts to ask questions too! Eventbrite link
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In preparation for Fiona’s step down as Chair of our charity, she has written a piece to remember her time with us over the last 17 years (!!) Download it here: FionaCopeland_EndofanEra_June2020
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We know little about how the new coronavirus disease (COVID-19) affects people with Primary Ciliary Dyskinesia (PCD). Therefore, PCD support groups all over the world asked for a research study which was set up in collaboration with a research team at the Institute for Social and Preventative Medicine (ISPM) at the University of Bern, Switzerland.
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Patient involvement opportunity: Helping hospitals to improve paediatric PCD care We have been asked by the NHS commissioners (paediatrics) to recruit four families who have recently had a consultation over the phone or via video conferencing software. The commissioners are looking to understand our families’ experience of care during the COVID-19 pandemic and to
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Fiona Copeland and Lucy Dixon facilitated an expert panel Q&A Session today (20th May 2020) with Dr. Priti Kenia, Dr. Manjith Narayanan, Dr. Daniel Peckham, Dr. Simon Range and Dr. Woolf Walker. The questions were submitted by our members of the past few weeks. Prior to the meeting we had agreed with the whole of
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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.