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BPSU

The British Paediatric Surveillance Unit is a world leading centre for rare paediatric disease surveillance. It enables doctors and researchers to investigate how many children in the UK and Republic of Ireland are affected by particular rare diseases, conditions or treatments each year. 

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BPSU - International activities

The BPSU is a founding member of the International Network of Paediatric Surveillance Units (INoPSU). INoPSU's mission is the advancement of knowledge of uncommon childhood infections and disorders and the participation of paediatricians in surveillance on a national and international basis.
BPSU
Conditions
Rare disease
Research
Document

BPSU impact - case studies

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
Rare disease
Research
Document

BPSU Rare disease tea party - reports from past events

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...
BPSU
Conditions
Rare disease
Engaging children and young people
Children and young people's voice
Patient experience
Patient involvement
Research
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BPSU study - Behçet’s syndrome

Surveillance of Behçet’s syndrome in children and young people concluded in May 2017. The study team hope to ascertain the incidence and prevalence of Behçet’s syndrome in children and young people. They also hope to examine the clinical presentation and management of the syndrome. A paper has n...
BPSU
Rare disease
Research