It’s International Epilepsy Day – a day for coming together to raise awareness. Batten Disease is one of many rare and complex epilepsies affecting families in the UK. While everyone’s epilepsy journey is unique, we take many steps in common too.
That’s why we’re so pleased to be part of the UK Rare Epilepsies Together network. Stronger together, we strive to improve outcomes for individuals and families through evidencing common unmet needs in diagnostics, treatment and care, to improve overall quality of life. See https://ukret.co.uk
All children and young adults with Batten will experience epilepsy in their lifetime so today is a timely reminder for all of us supporting or living with Batten to make sure individual epilepsy support plans are clear, up to date and accessible.