CSF Leak Association - The Cerebrospinal Fluid Leak Charity

21/07/2026

👏 An important milestone for Spinal CSF Leak Australia and a significant step forward for the entire CSF leak community.

WORKING FOR POSITIVE CHANGE

The first official meeting of the Medical Advisory Board of Spinal CSF Leak Australia marked a milestone in the charity's work to drive positive change for everyone who experiences the debilitating symptoms of Spinal CSF Leaks and those who care for them. With a wealth of understanding of the current clinical and research landscape, this group are determined to drive positive changes to prevent iatrogenic leaks and improve the care pathways for those who experience a leak.

16/07/2026

🧠 Timing in CSF Leak Diagnosis 🧠

A fascinating new study from Dr Tomas Dobrocky, Dr Jürgen Beck and colleagues in Bern and Freiburg has shown that MRI findings in Spontaneous Intracranial Hypotension (SIH) can change significantly over time. Researchers found that brain MRI abnormalities may be most pronounced in the weeks after symptoms begin and can become less obvious months or years later.

This research highlights an important message for patients and clinicians alike: a less obvious MRI does not necessarily mean a CSF leak is not present.

👏 A huge thank you to the team in Bern for their continued commitment to advancing our understanding of spinal CSF leaks and improving diagnosis for patients worldwide. Their work continues to make a real difference to the CSF leak community. 💙

📖 Read the study: https://www.ajnr.org/content/early/2026/06/11/ajnr.A9470

15/07/2026

Please show your support for a national plan for neurological conditions now. If you are able, please sign our open letter to the Secretary of State for Health and Social Care here: https://bit.ly/4w5hHAY Thank you. Anyone in the UK can sign and show their support.

23/06/2026

Every media appearance helps us reach someone, who might finally recognise their symptoms.

In this interview with Latest TV, GP and trustee of CSF leak Association Dr Bern Hard shares her sudden and life-changing experience with a CSF leak.

She explains the positional symptoms that so often go unrecognised and why early diagnosis is critical to preventing prolonged suffering.

Dr Hard also highlights the vital work of the CSF Leak Association, including the urgent push to establish a UK patient registry, an essential step toward improving treatments, understanding, research and funding.

🎥 Shown live on 28 May the interview is now available to watch on YouTube:

👉 https://youtu.be/Yn9R0nEfwnk?si=qjcVMxc4nvkH-cVr

By watching, sharing and talking about CSF leaks, you could help someone get the answers they’ve been searching for. 💙

21/06/2026

Thinking of all the Dads affected by CSF leaks on Father’s Day 💙

21/06/2026

This Father’s Day, we’re sharing a reality many families face but few talk about.

Living with a CSF leak doesn’t just affect the individual, it impacts their ability to be present as a parent. For this dad, the hardest part isn’t only the pain, but feeling like he can’t always be the father he wants to be.💔

Behind the smiles are struggles, resilience, and determination to keep showing up - even when it’s incredibly hard.

We are committed to raising awareness, improving diagnosis, and ensuring that no one has to navigate this condition alone💙

👉 This Father’s Day, help us make a difference:

💎 Share this story
💎 Start conversations about CSF leaks
💎 Support better understanding and care

Because every parent deserves the chance to be fully present for the moments that matter most💙

19/06/2026

🧬 New research could change how we understand CSF leaks

A study in The Lancet Neurology has identified a possible genetic link in some people with spontaneous spinal CSF leaks.

Researchers found evidence that changes in a gene called FBN2, which affects the strength of connective tissue are a major genetic risk factor for type 1b spontaneous spinal CSF leaks.

This may help explain why the dura (the protective layer around the brain and spine) can become weakened and more prone to leaking.

For many in our community, this is significant.
So often, people with CSF leaks:

💧Have no clear cause
💧Don’t fit known connective tissue diagnoses
💧Face long delays to diagnosis

💡 This research suggests there may be an underlying biological reason, even when it’s not visible.

It’s still early, and not all leaks are genetic—but this could be a step toward better understanding, earlier diagnosis and more effective treatments 💙

🔓open access paper

🔗 https://www.thelancet.com/journals/laneur/article/PIIS1474-4422(26)00140-7/fulltext

Parks C, Singh M, Wohler E et al.Spontaneous spinal CSF leaks: a rare variant exome sequencing study and functional analysis. The Lancet Neurology, 25, 664-672

Thank you to all involved in this landmark paper 🙏

09/06/2026

📢 New research update for CSF leak patients

A new study in the American Journal of Neuroradiology (May 2026), led by Dr. Andrew Callen and colleagues, looked at 44 patients with suspected CSF leaks that couldn’t be located on imaging.

🔹 Researchers explored spinal compliance (how the spinal CSF space responds to pressure) as a possible marker
🔹 Patients with higher spinal compliance were more likely to benefit from an epidural blood patch

💡this may offer a new way to predict who might respond to treatment and support better care decisions.

📖 https://doi.org/10.3174/ajnr.A9432

08/06/2026