For over 30 years the BPSU has facilitated research into rare disease and conditions. The Unit produces a yearly annual report and bulletin.

This page provides links to study publications, copies of annual reports and bulletins.

Published papers

The BPSU has initiated over 90 studies, collected informations on over 25,000 cases and contributed to the publication and presentation of over 300 papers. 

View published papers

30th anniversary report

For over the 30 years the BPSU has been facilitating research into childhood rare diseases and disorders. To mark this milestone and to celebrate the Unit's ongoing impact we have now published our 30 year anniversary report.

View anniversary report

Annual reports

The BPSU publishes an annual report which provides an overview of the work of the Unit and its impacts over the year. The report provides updates on the progress of studies on the 'Orange Card' and interim data analysis.

View annual reports


The Unit produces a bulletin three times a year providing study updates, notes on forthcoming studies and provisional data analysis.

View bulletins