Who we are

We are the UK’s dedicated charity supporting those affected by Primary Ciliary Dyskinesia (PCD), championing vital research into this rare disease since we began nearly 30 years ago.

Having worked hard to establish a national PCD diagnostic service in 2006, followed by a Paediatric Management Service for PCD patients across England and Wales in 2012, we subsequently successfully lobbied for NHS funding for an adult service, now up and running since 2019.

Today we tackle the latest challenges presented by this rare disease, putting our patient community first. We also work in close partnership with our clinical professionals, championing research to improve the lifestyle of those affected by PCD.

Our Vision

Committee

Medical Board

Scottish Working Group

Alliances

Support Groups