A Brief History

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 from around the world 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.

Get Involved

You can support the mission of the CSF Leak Association in many different ways. If you want to help you can find out how by following the links and deciding which method fits you best. We appreciate any help you are able to give..

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