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.
This page provides guidance and resources for delivering an effective transition from children's to adults' health services. We highlight five key determinants that ensure young people are provided with high quality care throughout the transition process.
Quality improvement (QI) needs to encapsulate all aspects of patient care - not just the clinical experience but service development, review and evaluation. These resources can help you ensure your practice prioritises patient safety, and that it strives to improve the experiences and outcomes of yo...