Rare disease

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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

Resource

Recipes for Engagement - children and young people in the lead - RCPCH &Us

Are you a child health worker? We want to make it easy for you to find out what those using your services think. With a cooking theme, our easy-to-read guide gives tested ideas on practically and creatively engaging children and young people.

Rare disease

Engaging children and young people

Children and young people's voice

Document

BPSU reporting instructions

Download monthly reporting instructions for the British Paediatric Surveillance Unit - for each current study and previous months.

BPSU

Rare disease

Research

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BPSU - Past studies

Details of completed studies of the British Paediatric Surveillance Unit, listed alphabetically by condition.

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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

Document

BPSU 'Orange Card' reporting scheme - applying to run a study

The British Paediatric Surveillance Unit (BPSU) welcomes applications from clinicians and researchers who wish to carry out national surveillance on rare childhood diseases.

Tuberous Sclerosis Association - Fellowship Awards [OPEN]

These fellowships are awarded to outstanding scientists with the potential to become leaders in the field of tuberous sclerosis research.

Award programme/theme

Fellowship (award type)

Maximum duration

3 years

Tuberous Sclerosis Association - PhD Studentships [OPEN]

These studentships are intended for postgraduates of high academic calibre. Applicants should be working alongside established academics in the field of tuberous sclerosis.

Award programme/theme

Studentship / PhD support

Maximum duration

3 years

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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

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BPSU study - Pierre Robin Sequence

Surveillance of Pierre Robin Sequence in the UK and ROI concluded in January 2017. The study team is hoping to identify the birth prevalence of Pierre Robin Sequence, outline its clinical presentation, initial management and 12 month clinical outcomes. The study is being led by Dr Marie Wright, winn...