Batten disease, also known as the neuronal ceroid lipofuscinoses (NCLs), are a group of rare inherited neurodegenerative disorders. More information about the condition is on the Batten Disease Family Association website.
Our Batten disease service is run by Dr Ruth Williams. Ruth has clinical and research interests in Batten disease and is involved in the diagnosis and care of a large number of children and teenagers, mainly from London and the south east. Ruth was medical adviser to the Batten Disease Family Association for many years.
The service accepts referrals on a 'shared-care' which enables us to provide expert input whilst still supporting teams locally. Ruth has links with number of healthcare professionals in Evelina London, nationally and internationally, who have expertise in the needs and care of children affected by Batten disease.
We also have a clinical nurse specialist to create a more holistic experience of care for patients and their family.