UKPIPS was started in 2012 by Liz Macartney and Geoff Moore, who both had a PID and realised that others needed contacts and help. They created the charity and registered it with the Charity Commission in England & Wales.

Since then medical specialists have helped to provide information on the conditions, other volunteers have set up  the website and  Facebook pages, get to know you events have been held in several venues, and many people have been helped with benefits claims and getting the medical help they need.