BPSU - Rare Disease Day

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Rare Disease Day 2015 - Living with a Rare Disease: Day-by-Day, Hand-in-Hand. 

The British Paediatric Surveillance Unit in collaboration with the RCPCH Youth Advisory Panel and Rare Disease UK hosted its second annual rare disease day tea party on Thursday 5 March 2015 at the Royal College of Paediatrics and Child Health.

The event was an informal networking event that brought together patients and carers, healthcare professionals, researchers and policy-makers. A mixed audience of around 100 delegates from a range of fields attended the event to network and listen to presentations on rare childhood diseases and disorders.

Presentations

Earl Howe congratulated the BPSU on its thirtieth birthday. He highlighted the importance the government gives to delivery on the UK rare disease strategy, particularly in responding to the need for speedy diagnosis.

Presentations were given by Professor Timothy Cox of University of Cambridge and Daniel Lewi from the CATS Foundation on Tay-Sachs disease, they emphasised the importance of research and collaborative working between patients/carer, health professionals and patient organisations. Professor Timothy Barrett presented the work of the newly established NIHR Translational Research Collaboration. Dr Nick Sireau, CEO of Findacure spoke on the parent's perspective of rare disease and the importance of actively engaging with patient groups in order to develop treatments. Thines Ganeshamoorthy from the RCPCH Youth Advisory Panel communicated his experience of living with a rare disease. Finally, Professor John Newton, the Chief Knowledge Officer from Public Health England rounded proceedings off with a presentation on the National Congenital Anomaly and Rare Disease Registration Service.

View pictures/tweets from the event

View pictures from the event

View selected Tweets from the event

Further resources

Contact

If you would like to know more about this event, please contact a member of the BPSU team - bpsu@rcpch.ac.uk.
 
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Pictures from left to right: Earl Howe; delegates networking; Dan Lewi presenting on Tay-Sachs; Prof John Newton presenting the Tizard Bursary.

logos of partners BPSU, Rare Disease UK and RCPCH