What is the BPSU?
Rare diseases and infections are an important cause of morbidity and mortality in childhood.
Although individually uncommon, together they number in the thousands. These conditions pose large emotional and financial burdens for affected children, their families and health systems.
The BPSU system lessens the burden on reporting doctors of receiving requests from numerous different sources for reporting cases of rare disorders.
The BPSU aims to encourage and support:
- surveillance of rare disorders
- awareness of rare disorders among clinicians and the public
- a rapid response to public health emergencies
- improvement in prevention, treatment and service planning for rare disorders
- public and patient involvement in research
- international surveillance of rare disease
The BPSU enables paediatricians to:
- participate in the nationwide surveillance of infections and infection related conditions
- promote the study of rare childhood disorders
- provide a mechanism by which 'new' diseases can be detected so that early investigation can take place
- Initiated over 90 studies
- Collected information on over 25,000 cases
- Published and presented over 300 papers
- Held several scientific symposia
- Encouraged links with parent support groups
- Encouraged the development of similar specialty units with in the UK and abroad
Associated Publications, Resources and Links
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