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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...

On 17 June 2019, more than 150 health professionals working in support of paediatric epilepsy services and patient organisation representatives came together at the second Epilepsy12/OPEN UK National Conference with the aim of learning from each other and improving the care offered to children and y...

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.

The fourth annual Epilepsy12 & Organisation of Paediatric Epilepsy Networks (OPEN UK) national conference took place on 14 September 2021. Over 150 health professionals came together to discuss improving paediatric epilepsy care. This was the second conference successfully hosted in an online format...

As a paediatrician, how well do you listen to parents, carers and children? The Paediatric Carers of Children Feedback (PaedCCF) tool helps you measure how well you interact with these groups in the Intensive Care Unit (ICU), and to identify any areas that may need attention. You will need to get at...