BPSU - Rare Disease Day 2014

Joining together for better care

On 20 March 2014 the British Paediatric Surveillance Unit (BPSU), in collaboration with Rare Disease UK and the RCPCH Youth Advisory Panel, held an event to mark Rare Disease day 2014 and the UK plan for implementing the UK strategy for rare disease.

Over 70 people attended the event including patients and carers, healthcare professionals, researchers  and policy-makers. All were united by the theme of the day ‘Joining together for better care’. A podcast was unveiled by the Youth Advisory Panel on living with a rare disease.

Podcast: living with a rare disease

Presentations

Presentations were given by Alastair Kent on implementing the UK strategy for rare disease; Professor Chris Verity on undertaking rare disease research and surveillance; and Miriam Evans on patient involvement in rare disease research. Earl Howe introduced the YAP 'living with a rare disease' podcast.

View pictures from the event.

Further resources

If you would like any further information on the event please contact either Richard Lynn (BPSU Scientific Coordinator) or call 020 7092 6174

Earl Howe with young person and mum; Miriam Evans talking about how to involve patients and carers in rare disease research; attendees at the event.

Pictures left to right: Earl Howe with young person and mum; Miriam Evans talking about how to involve patients and carers in rare disease research; attendees at the event.