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...
Download monthly reporting instructions for the British Paediatric Surveillance Unit - for each current study, and for previous months.
On 10 September 2020, we hosted our third annual Epilepsy12 & Organisation of Paediatric Epilepsy Networks (OPEN UK) national conference 2020: 'Working together to improve epilepsies’, as a live webinar. Access resources and presentations from the event on this page.
We are now accepting data for the 2020-21 audit year. Download the current dataset, templates for submitting data via CSV and questionnaire and our user guide.