Ramadan during covid-19 (for people with PCD)
Information on Ramadan for those with PCD during the covid-19 pandemic is available here (downloads as a .pdf file). Do not hesitate to contact us if you have any questions or comments.
More Information
News and Events
Poster Competition!
PCD Family Support Group Poster Competition (16 and under only) Design an educational poster for people with PCD on one of these themes: 1) Washing your hands 2) The importance of physiotherapy and exercise or 3) ‘PCD and Me’ Email a good-quality scan or photo of your child’s poster to comms@pcdsupport.org.uk by 1st June 2020. The winner
More Information
Update on Coronavirus for PCD Patients and Families
27th March 2020 Statement from the National leads of the children and adult PCD centres in England Following discussions between all the National leads for the both the Children’s and Adult PCD centres we advise that: All patients with PCD should be considered to be ‘extremely vulnerable’ and should therefore follow PHE guidelines for shielding
More Information
PCD Event in Leicester – Thank you Rifat!
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
More Information
Fundraising by cycling 1800 km!
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
More Information
Donation from Bartlett Mitchell – Thank You!
A massive thank you to George who has helped us secure a funding of £1,000 from his company Bartlett Mitchell!
More Information
PCD Awareness at the Royal Manchester’s Children’s Hospital
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!
More Information
Rare Disease Day Reception at the House of Commons
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
More Information
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
More Information
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
More Information