We’re a registered charity working to raise awareness of cerebrospinal fluid (CSF) leaks, to provide support to sufferers and their families, and to secure diagnostic and treatment advancement.

Smiling woman lying down and giving a thumbs up, overcoming challenges with a positive attitude. Medical MRI scan revealing a thoracic spinal CSF leak.


Learn more about upcoming events and read articles to find out more about the CSF Leak Association by clicking on the links below.

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Posted on May 03, 2024

Podcast episode on SIH Guideline

This episode of the Practical Neurology Podcast is essential listening for all parties with an interest in CSF leak, CSF dynamics, and…

An Introduction to Cerebrospinal Fluid (CSF) Leaks

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Understanding the condition

Raising awareness of the condition and educating medical professionals and sufferers is one of our major goals. Watch the video and follow the links below to find out more details about the CSF Leak condition.

We understand that attending medical appointments can be very stressful at the best of times.

For those with a CSF leak/orthostatic symptoms, this is made even more anxiety-inducing before the appointment even happens due to worry about the need to remain recumbent/flat as much as possible.

Patients may be entitled to free patient-transport to facilitate this need. Local authorities often provide stretcher ambulances for patients with a genuine need.

We advise you speak to your GP in the first instance, as well as the health-care provider who has issued you with your appointment.

For more information and help:

England - contact your GP as each health authority has a different policy

Wales - phone 0330-1232303

Scotland - phone 0300-1231236

Northern Ireland - contact your GP

More Information

Causes Symptoms

Patient Experiences

Cerebrospinal fluid leaks aren't just something mentioned briefly in medical textbooks, they affect people and their lives. The impact on individuals and their families can be huge and, when left unresolved, a CSF leak can be life-changing.

Read all stories

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Become an Association Member

As an organisation, our aim is to provide support to all sufferers of cerebrospinal fluid (CSF) leaks and, in addition, their family, friends and medical advisers. Member benefits include:

  • Access to our members’ mailing list
  • Access to our online membership system
  • Access to our members’ network directory
  • Access to our membership library
  • Right to attend and vote at members’ meetings

Resources & Factsheets

We have prepared information and resources which we hope will help to raise awareness of CSF leaks and the associated medical condition Intracranial Hypotension

Information For


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Information For

Medical Professionals

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Information For

SIH Guideline 2023

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How you can help

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

Learn About the Association


If volunteering is something you think you are able to commit to, then please follow the link to find out more about how you can help.

Find out about volunteering


Any donations are appreciated and will help to raise awareness. Please follow the link to find out how you can make a donation.

Give today


There are different categories of membership so please follow the link to find out which category fits you best.

Become a member

Raise awareness

Help us raise awareness of the condition by keeping up to date about what can be done by signing up for our newsletter below.

Sign up to the newsletter

Tips for Fundraising

If you wish to contribute by fundraising please follow the link below for tips on how you can make a difference.

Read the fundraising tips

Online Shop

Support our mission by getting something for yourself or loved ones from our online shop.

Purchase items to support

CSF Leak Association Fundraising Hiking and Running