The CSF Leak Association is a registered charity in the UK, working to raise awareness 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 to early 2014, when a group of CSF leak sufferers from around the world came together to create a website called CSFleak.info. 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.
As well as acting as an information hub for patients, their families and medical professionals, and being flag bearer for the condition itself, we work in partnership with other charities and organisations with a common goal of securing better recognition and provision for rare diseases and under-diagnosed conditions.
In the coming years, the CSF Leak Association will also be working closely with our Medical Advisory Committee to prepare and publish new educational resources and materials, to support the adoption of clear and consistent diagnostic and treatment pathways within the NHS and, ultimately, to encourage and facilitate research so that the condition can be better understood.
If you haven’t already done so, I would encourage you to browse our website and download copies of the various the factsheets and other publications that are available there. We also have a number of social media channels, such a Facebook, Twitter and YouTube, which are well worth a visit.
Our core publications, such as our cerebrospinal fluid leaks overview leaflet, have been published in consultation with top UK neurologists working in the field of CSF leaks, and are therefore ideal for taking with you when you see your GP or attend other health care appointments.
For now, though, I’d like to thank you for taking the time to visit our website and showing an interest in our work. If you have found the site or our publications of use or would just like to get involved, please consider joining us in membership or making a small donation to help us to keep doing what we’re doing.
Chair of the Board of Trustees