0:00 Introduction2:00 Allison’s personal journey to researching epilepsy and ring chromosome 20 syndrome4:00 Biggest challenges families face with ring chromosome 20 syndrome11:00 Incidence and prevalence of r(20) syndrome, and how we can improve data reliability 21:00 Applying next generation sequencing to r(20) syndrome gene research29:00 Engaging in partnerships to broaden participant pools and academic research31:00 Facilitators and challenges of patient-led research: PLRH.org35:00 Common causes with other patient organisations, and the origin of the UK Rare Epilepsies Together Network 42:00 Closing remarksPlease consider rating and reviewing) us on your chosen podcast-listening platform!
