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.
Members
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.
Learn more about upcoming events and read articles to find out more about the CSF Leak Association by clicking on the links below.
Don’t miss out—mark your calendars and stay tuned for more details including how to register!
follow @standingupforleakers on Instagram
An Introduction to Cerebrospinal Fluid (CSF) Leaks
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
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.
The fight for Pam
Wednesday 21st June 2023 was one of the hottest days of the year. We sat in a daze, the sun bright in our tear worn eyes outside the hospital wondering, again, what was in store for us Read more
Keeley Burney
I’d been unwell for 10 years with flares of ill health; experiencing awful headaches... Seven years ago, I was diagnosed with fibromyalgia. Two years ago, I became unwell but knew there was something wrong... Read more
Bernadette Hard
I encountered a stressful event that threatened key aspects of my life, I felt like my head would explode but I never in a million years believed that it literally would do exactly that. Read more
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:
We have prepared information and resources which we hope will help to raise awareness of CSF leaks and the associated medical condition Intracranial Hypotension
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.
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.
Any donations are appreciated and will help to raise awareness. Please follow the link to find out how you can make a donation.
There are different categories of membership so please follow the link to find out which category fits you best.
Help us raise awareness of the condition by keeping up to date about what can be done by signing up for our newsletter below.
If you wish to contribute by fundraising please follow the link below for tips on how you can make a difference.
Support our mission by getting something for yourself or loved ones from our online shop.
Donate
Medical Guidelines
Become a Member
Resource
