INTERNATIONAL EVENTS
BPSU – Rare diseases in paediatrics – from birth to transition - 30th Anniversary conference and Rare Disease Day tea party
In 2016 the British Paediatric Surveillance Unit (BPSU) will celebrate its 30th anniversary and to mark this occasion the Unit will hold our seventh paediatric rare disease conference.
Exploring the theme ‘Rare disease in paediatrics – from birth to transition’, the conference will centre on the patient's journey from diagnosis through to transition and end of life care.
Cutting edge scientific data will be presented from world leading clinicians, scientists, policy-makers and patient groups. Presentations will review the child’s journey from diagnoses, treatment developments through to transition and the impact that this has on patients and their families.
The conference will be rounded off by our rare disease tea party – which has established itself on the calendar as one of the main events for UK rare disease activity. Please do join us to mark this occasion!
Programme features
Session 1 - Improving and speeding-up diagnosis
100,000 genome project; pre/antenatal diagnosis; neonatal screening
Session 2 - Research in practice
Rare disease registers - supporting treatment development; sudden and unexpected postnatal collapse; severe combined immune deficiency
Session 3 - Adolescence and beyond
Transition - how can it be made to work; life limiting care; real lives growing up with rare disease
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