BPSU - Information for the public

For each new BPSU study, the researcher produces an information leaflet for members of the public. These leaflets inform people about the rare conditions being studied by the BPSU in a straightforward and lay-friendly manner.

The leaflets avoid using medical terminology where possible and provide explanations when this is unavoidable, making them accessible to members of the general public. They provide information about the condition and why the study is being undertaken. They are written with the help of patient or public representatives, this is often a patient support group.

Please feel free to download and print the leaflets below for your own use. Clinicians might wish to post the information booklet on the hospitals patient/parent information boards. Patient support organisations may wish to place them on their websites.

Information leaflets currently available: