Since 2014, we've invited stakeholders from across the rare disease community to this informal networking event. Young people speak about their experiences of living with a rare disease, and patient advocates, researchers and health professionals talk about working in the field. Read on for highligh...
The BPSU has facilitated research into over 100 rare conditions. In many instances, the findings have had an immense influence over decisions relating to the condition and patient. Read case studies on the impact of BPSU's research below.
BPSU study - Surveillance of female genital mutilation (FGM) in children and young people under the age of 16 in the UK and ROI
Female genital mutilation (FGM) is a procedure which involves deliberately cutting or causing injury to the female genitals. This can include partial or total removal of the external female genitalia intentionally for non-medical reasons. There are no health benefits of FGM for girls and women and c...