CSF Leak Association
CSF Leak Association Could that persistent headache be more than migraine? The CSF Leak Association is the UK charity dedicated to improving the lives of people affected by cerebrospinal fluid (CSF) leaks, a treatable but frequently misdiagnosed neurological condition. For many patients, the key clue is an orthostatic headache: symptoms that worsen on standing and improve when lying flat. Yet awareness remains low, and patients often spend months or years seeking answers before receiving the correct diagnosis. During that time, they may experience debilitating headache, neck pain, dizziness, tinnitus, cognitive difficulties, visual symptoms and significant impacts on work, family life and mental wellbeing. GPs are crucial to changing this story. Early recognition of the red flags and timely referral to neurology can dramatically reduce delays to diagnosis and treatment, helping patients access effective care and regain their quality of life. We led the development of the world's first multidisciplinary guideline for spontaneous spinal CSF leaks and continues to support healthcare professionals through educational resources, patient insights, webinars and awareness initiatives. Visit our stand to discover the signs that could point to a CSF leak, access free clinical resources and learn how a simple question about whether symptoms improve on lying down could help transform a patient's future. Think orthostatic headache. Think CSF leak. Refer early. Restore lives.