Many thanks go to Rifat who organised an event to raise awareness for PCD in Leicester on 29th Feb for Rare Disease Day. Rifat reached out to over 20 families in the area and even raised £214 for us in the process! Alison Claydon (PCD Nurse) and Rajinder Kang (PCD Physiotherapist) also attended to educate
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Dan and Darcy preparing to take on a self supported, 14 day, 1800km race through Kyrgyzstan for Primary Ciliary Dyskinesia. This trip is to raise awareness and money for the family support group for people affected by PCD. Dan and Darcy plan to ride the Silk Road Mountain Race in August which is the perfect
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A massive thank you to George who has helped us secure a funding of £1,000 from his company Bartlett Mitchell!
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A special thank you goes to Elizabeth and Amy who work on Ward 79 for consultant Dr. Anirban Maitra at the Royal Manchester’s Children’s Hospital who educated the ward staff who look after our PCD patients during their hospital admissions with a trolley full of resources!
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On 26th February, three of our committee memebers (Fiona, Myra and Gary) attended the Rare Disease Day Reception at the House of Commons. Liz Twist MP opened the event and there followed talks from Dr Jayne Spink, Chair of Rare Disease UK, Dr Jenny Harries, Deputy Chief Medical Officer for England, and two patients affected
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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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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
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Scottish PCD Day October 2019 On 5th October 2019, the PCD Family Support Group Scotland were delighted to hold their third Family PCD Day. We chose the month of October to coincide with Global PCD Awareness month. This year’s venue was the Queen Elizabeth University Hospital Campus where we were warmly hosted by Liz Dougan,
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All the information to participate in this short survey for research into the psychological wellbeing of patients with PCD is available here: PCD & Psychological Wellbeing Recruitment Poster
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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.