About Us

The CSF Leak Association is a registered charity in the UK, working to improve understanding and treatment of cerebrospinal fluid (CSF) leaks and associated conditions, such as intracranial hypotension.

We became formally established as a Scottish Charitable Incorporated Organisation in February 2016, but our story stretches back further than that. In early 2014, a group of CSF leak sufferers came together to create a website called CSFleak.info to share information and raise awareness. It was that website which ultimately went on to become the charity that we are today.

Despite being a relatively young organisation, we have big ambitions and have made significant progress in a short time. Each and every one of us involved with the charity works passionately to shine light upon this under-diagnosed condition. Most of us are current or former sufferers ourselves, so we are very much an organisation run by CSF leak sufferers for CSF leak sufferers.