The PCD Family Support Group was formed in 1991 to:

  • Provide support to patients and their carers who have, or are suspected of having, PCD
  • Bring PCD to the attention of medics who may come across PCD and continue to provide an up to date information service for them and the general public
  • To promote research to aid diagnosis and treatment of patients with PCD
  • Support the NHS and other bodies to ensure patients have access to diagnostic services and on-going care
  • Fundraise to support the above activities

We are a registered charity which is run by a committee of volunteer trustees. We are also supported by the PCD Medical Board which is a group of clinicians/scientists with an interest in PCD. This group is led by Dr. Mary Carroll, Professor Claire Hogg, Dr. Michael Loebinger, Professor Jane Lucas, Professor Chris O’Callaghan,  Dr. Daniel Peckham and  Dr. Simon Range.

In 2010 we formed an alliance with other groups of conditions where the cause of the problem is cilia related. Many of these conditions are rare and consequently attract minimal research funding into treatments and potential cures. The Ciliopathy Alliance represents patients and their families suffering from ciliated diseases including PCD, Alstrom Syndrome, Laurence-Moon-Bardet-Biedl Syndrome and Polycystic Kidney Disease. Together with medical researchers and clinicians interested in these conditions we hope to:-

  • Share knowledge and understanding
  • Promote awareness of ciliopathies and the respective patient organizations
  • Encourage collaborative research and facilitate where possible
  • Apply for research funding from government, trusts and foundations

Keeping ahead of COVID-19

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.